Wednesday, October 14, 2009

I Don't Need To Be This Needed

Really, I'm not that good a person. I don't have enough patience, enough compassion. If you'd asked me a year ago, I'd have said that I do...but I'd have been wrong. Because this life is wearing me out before my time. My stomach and my head always hurt, I'm more tired than is justifiable, and "irritable" does not begin to describe my state of mind.

We've been to just about every doctor we can, and they're all coming up empty as far as a diagnosis for Alex, except that "probably" his bipolar disorder has morphed into a different form of the disease than what it has been for most of his life. I'm not really buying it, but what I do know is that he is miserable almost all the time. The rare smile or laugh I can manage to elicit is a huge victory. We're beginning the disability process, which is depressing in and of itself.

I'm very, very worried about how he will fill his days now, because the more he isolates, the less active he is and the more depressed he becomes. He's already checked himself into the hospital for depression once this month, and talked about doing it again earlier today. He seems to really need order and guidelines and a solid routine, but how is he going to get that at home alone every day?

I'm also torn about how much help to give him. He's capable of a good number of things--he feeds and tends to the animals, and helps get Bella ready for school in the mornings, for example. But other things (confoundedly to me) seem beyond him, like preparing even simple meals for himself. I worry about him going hungry, which he does pretty much every day if I don't feed him. It doesn't seem to be a matter of can't as much as a lack of will, if that makes sense. When Bella begged him the other night to make his special spaghetti, he gave it his all and did a darned good job. So the ability is there, somewhere. The therapist we were seeing suggested that I might be doing too much for him, so we've been having a kind of standoff about lunches...he should be able to put together a sandwich, darn it. Instead, he goes without. All day. And then has fast food on our way home from picking Bella up from school, because he's famished...and then expects a full meal to be prepared later that night after Bella goes to bed...at which point I balk in a big way, because, as I've said, I'm just not that good a person.

Complaining that you can't believe you have to go to bed hungry elicits the following response from me: "I can't believe you're going to bed hungry, either." Our freezers, pantries, and fridge are FULL of food. What they are not full of, I suppose, are completely prepared, ready-to-serve meals. But you know what the components of meals are? FOOD. So yeah, it makes me a little bit crazy to hear, "There is NOTHING TO EAT in this house," when I can walk 10 feet and put my hands on fruits, vegetables, nuts, fish, poultry, meat, cheese, etc.

I guess I'm going to need to start packing lunches as if he were the one going out of the house, instead of me. I can't really think of anything else to do, to avoid having the same stupid fight every night. And I'm just selfish enough that it really galls me to have to work that into my schedule. See? Not that good a person.

I'm really having a difficult time with the transition from partner to... partner/caregiver, or whatever you want to call it. It's too easy to get all whiney and I-didn't-sign-on-for-this-y, so I try not to do that, but gosh, it's hard. And it's especially hard when the person you're doing it for seems to be angry with you about 80% of the time. I love him, you know? And I love him enough to understand that his anger comes from frustration--a well-earned frustration with the brain that is betraying him--and that he's not really angry at me, he's just angry, period, and I'm...well, I just happen to be here. But you know what? Understanding it does not making it easier to experience it. And it doesn't stop those occasional fantasies of running away from it all, leaving the crushing responsibility behind and just starting over.

But I could never do that, no matter how bad it gets, because, I suppose, when you get right down to it, I'm not that bad a person, either. No, wait, I don't like how that sounds. Because I would not judge someone who felt they couldn't withstand this burden, and chose to get out from under it. I think of that old hokey song, "He Ain't Heavy, He's My Brother," and it almost applies. Because my husband's problems? Well, they ARE heavy. Really heavy. But he's my husband, and I love him, so I own them too, and they're mine to carry. I just need to devise a better yoke.


family

19 comments:

  1. You ARE a good person.
    I know you're hurting and afraid.... I wish I could help make it better for all 3 of you.


    **hug**

    Tony

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  2. Oh, Belinda. I'm sorry it's still so hard. I believe (down to my toes) that there's an answer out there for your family. Perhaps the key to continuing to put one foot in front of the other right now is to not allow yourself to believe that this is the last stop, you know? And trust me, I would totally be freaking out and believing it was, in your position, so I know it's not easy to continue to hope. It's harder to be hopeless, though.

    Still praying for y'all. And you are an EXCELLENT person, whether you want to be or not. So there.

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  3. Belinda, I am so sorry that this is still going on in your life. I know from helping my Grandad that taking care of a mentally disabled person can really effect your life. I was able to help them out a bit by getting meals on wheels to deliver to their house, they bring a prepared lunch, and get them free housekeeping. I think I called the Jacksonville Senior Center and spoke to a counselor. You might call over there and see if they can help at all, even though Alex is not a senior. Also, check with the Department of Human Services in Jacksonville. I believe they also have a lot of programs that you might qualify for. The counselors are very nice and both places, just explain your situation and see if they have any programs that may help. My prayers are with you and your family. Please let me know if there is any way I can help you. I know we don't keep in touch like we should but I still consider you one of my best friends. Love you.

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  4. Hey Belinda, setting limits on what you will or will not do isn't bad, and it doesn't make YOU bad. The problem with a yoke is that it takes your shoulders a little time to get used to its shape and weight. I wonder if this burden won't become a little easier to bear after some time passes and everyone has a chance to settle into the changed routine...you and your family are in my thoughts.

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  5. Oh honey....

    I miss you, and I can't even imagine how hard it's been for you. I wish somehow things would fix themselves, and everything would be like it was before all this happened, i really do.

    Anything you need, just ask, okay?

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  6. I am so sorry this is such a hard time for you, Belinda. I wish I could cure it all with a new bento box for you. xo

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  7. You are an amazing woman and I am honored to have hugged you, IRL. Wish I could do that, right now! Sending you all good thoughts, anyways.

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  8. "Understanding it does not making it easier to experience it."

    In my admittedly short existence on this planet, I wish I had at least a dime for every time I've had to realize this.

    Also, I wish there was something I could to do help you and your family through these hard times. Though we've never met I treasure your posts, quips, thoughts, and recently just updates on your life and troubles. Every time my RSS feed has NINJA POODLES! highlighted I do a little happy dance.. then I read your posts and, honestly, cry. You are being a much better person than I probably could be during all this..

    Also, wish this was a real one instead of digital but *HUG*

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  9. PS - Obviously I don't cry at EVERY post... and if wishes were winning lottery tickets at least that would be one less thing to worry about!

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  10. You are a good person. You're also a person who is having to deal with SO, SO much. It's hard to see rhyme, reason or anything else for the way life shakes out. You're good. You're trying. You're doing it. xoxo

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  11. Just a thought... and I know that this is probably something you've thought of already, but I'll throw it out just in case.

    What if breakfast/lunch was your job, but getting dinner on the table for everyone was his? And that the expectations of what dinner was composed of were fairly well laid out (wether you do an actual meal plan together or just a requirement of a protien, veg and carb).

    I don't know how similar bipolar is to depression in this, but I found that if I had a really clear, required task, with a clear "solution", that I could do it. If I just had a vauge responsibility, I couldn't manage it.

    I wish I could help... I hope things become more manageable with time.

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  12. Oh god. I feel your pain... my father was very depressed towards the end of his life, and I remember having to tell him that he needed to eat, and to take a shower. I was furious/sad/terrified because he was supposed to be the parent, not me!!

    And yet, I think this is a mark of the depression--lack of will to do anything for one's personal self. I have a tendency towards depression myself, and when I know it is not under control, I start to skip meals and lose weight. Feeding myself (let alone preparing food) is just too nuturing and *kind* somehow. I don't want to be kind to myself when I'm like that. And then I too gravitate towards fast food--the instant pick-me-up rush of the calories and fat and sugar help somehow...

    So I get it, from both perspectives somehow. You poor dear. I am so so very sorry.

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  13. No matter what, you could never, ever be a bad person.

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  14. Belinda - I know you and I have talked before with regard to my BPD. It's crippling to me so much of the time. Some days, I can't even figure out where the refrigerator is, let alone prepare a meal for myself. My husband, God, he is the same kind of angel you are. If it weren't for him, I'd probably find myself wandering the streets aimlessly.

    Recently, he started working in California which of course, leaves me to my own devices. Some days, I am successful. Other days, not so much.

    And I don't know about Alex, but I feel immense guilt every single day about what I put him through. Sometimes, I feel like he is still with me because he is afraid of the alternative (my slow demise). He wouldn't be able to live with that. He tells me I am wrong...that he is still here after all this time because he loves me more than anything. But I am such a burden on him. That, compounded with my disease makes me miserable most of the time.

    BPD is probably one of the lonliest diseases in the world. It is isolating and unless you have it, or are the caretaker of someone who does, you cannot understand the immensity of it.

    I feel for you. I understand it from Alex's perspective...but I have so much empathy for your situation as his wife.

    If you ever need to talk, you know where to find me.

    Cher.

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  15. This is going to sound batshit but after dealing with my husband's depression and hearing about your experience... Sometimes I just think men are too fragile with that broken y chromosome. Like they are really seriously missing some information that leaves them lacking resilience. Not that that helps any one of us.

    I like EE's suggestion above of sharing out meal responsibilities. If he's assigned family dinner, maybe even work up a short list of menus to rotate through. Specific is good.

    I'm glad you have doctors and hope you find more resouces. This job needs more workers than just you.

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  16. Just remember God never gives you more than you can handle! I will keep you in my prayers!

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  17. It has been awhile since I have check here, as well as your pics on Flickr. I know we don't know each other, we've only passed a few words to each other over the internet over the past few years- but I have to say, I agree with EE in regard to the meal sharing and having specific, simple tasks. I certainly don't know anything about BPD, but I have a lot of personal experience with depression, panic attacks, agoraphobia and how that effects day to day living.
    For me, it also isn't because I don't know how, nor is it because of lack of will that I sometimes don't eat properly or at all. I either am not hungry, or just walking into the kitchen can induce a panic attack. My brain sometimes feels scrambled. Like there is too much going on in there and to try to break thru and think to do a simple task as deciding what to grab to eat is at best, overwhelming. I don't know if that is how Alex feels, but I'm throwing it out there.
    YES! Structure and routine are good. It keeps us focused to specific things and doesn't allow our brains the time to wander. And in my case... sometimes the fear of what is happening to me mentally when I am in one of those funks, paralyzes me, I can't think and I can't move. I start focusing on something as simple as coloring in a coloring book. Something that keeps my focus narrowed down a specific... or I'll wander out side and trim back some tree branches, etc.
    Mental illness is difficult not only for the person suffering from the disease, but for the loved ones and caregivers. Mental illness doesn't always show on the outside, and for the person suffering, can't always express what they are feeling, cuz they just aren't sure.
    Sometimes just a hug from those we love. Sometimes just for those to sit with us for a few moments while we work through a rough moment means a lot.
    It's hard for those who haven't gone through it. I see that in my partner sometimes. But we ALL do the best that we can do at the moment, with what we've got. And I believe that is all that God ever asks of any of us.
    I will be holding you and your family in my prayers.

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  18. You've probably heard the saying: God only gives us what we can handle; I only wish she didn't think I could handle so much! You're in a tough situation. I hope the routines (feeding animals, etc.) are helping Alex get on track. Depression can be such a difficult illness - for the sufferer and the sufferers around him.

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