Thursday, January 21, 2010


Can I just talk about myself for a minute? Oh, wait, this is a blog. That's what we do here. Never mind.

I don't like what I'm becoming. I'm losing my patience, my compassion, and at times, it seems, my humanity. I'm seeing myself harden to the constant demands of my ill spouse, because no matter how many times I respond, there will always be more, and more, and more. There has to be a self-defense mechanism in the face of the constant demand on me, and I seem to have defaulted to a terribly unattractive one. I'm irritable, short-tempered, and LOUD. I'm becoming bitter, hard...cold. I think I had a passing urge to vote Republican.

I need a break from all this. I know it, my doctor knows it, everyone who's had any interaction with me in the last month, including the poor kid at Sonic who failed to make my Route 44 Diet Dr. Pepper with "easy ice" like I asked, knows it. "Here, ma'am, I'll make you another one, maybe even slip some Xanax in there for you, just please stop crying in the drive-thru." That's an easy call to make, especially if, when being in my presence for more than 5 minutes, you experience tears, self-pity, and desperation. "Hey, umm...have you thought about maybe, uh, getting away for a bit? You know, just until your, um, essence of nutbar fades just a tiny bit?"

I'm in total agreement with that sentiment. I would LOVE to go away somewhere. Anywhere. Or just to be alone in my own home, for that matter. For even an hour. But it's just not possible. I can't get into another room, and I mean that literally--I cannot go to another room--without bringing along a sad, confused, demanding shadow. I've managed a lone trip to the grocery store, but I only pulled that off by resorting to trickery, and the ensuing guilt kind of made it not worth it. Plus, I was grocery shopping. Not exactly a massage or a mani-pedi.

Why am I even whining about this? Maybe just to get it out. Or to see if maybe anyone has any real for actual, even temporary solutions. Mainly, I think I'm trying to just stop and recognize what's going on, so that perhaps I can halt, or at least slow, this gradual calcifying of my spirit. I used to be fairly happy with who I was, and I'd like to be again. Maybe a miracle will happen. Maybe an amazing and benevolent doctor will find this case study so fascinating that he or she will actually care about our outcome. Maybe Hezekiah Walker will call me up with some inspiration. Maybe Oprah will give me a German cuckoo clock.

You never know.


  1. Hi Belinda. I divorced my bipolar husband (he would not stop self-medicating, and I realized I couldn't help him). However, when I was living with him, I took Lexapro and I believe it really helped me a lot. My anxiety level went way down, and I really needed that. Also, you really do need to find a way to get some time for yourself without feeling guilty. Please please please take care of yourself. You do deserve it. - Rita

  2. I know it's easy for someone who hasn't walked in your shoes to dispense "easy" advice, for there is no "easy solution" here. I pray for an intervention from a somewhat outsider. You need tangible help in this situation, for when you are so entwined and close you lose the ability to make decisions. You could benefit from someone who cares about you both, but has some objectivity. I sense that you feel entangled in a web of despair--I'm praying for you now! Hugs, V.

  3. Just wanted to say that my prayers are with you. I only read two blogs, and yours is one of them. Please take care of yourself. I have no idea what to suggest to help you do that, but it is important. Hugs here, too.

  4. Belinda~ my husband also had a horrid illness~the stress on me was unbelievable and i believe i know where you are coming from with these feelings~~i know one thing that helped me was for me to do deep meditations~ where i would "escape in my mind at least"~~therapy also helped me~ken decided to take his life and it was horrible~i still often wonder if i had done something different would he had made another decision~

    if there is anything i can do to help let me know~i've also been through it with dad dying{i was here 24/7 for that} and i am still here with mom
    i'm not that far away so if you would like me to come help so you can get away i will


    ccinmotion on twitter

  5. i thought i had your email and i was going to send you my phone # and write some more "helps" that i have found helpful


    my email is

  6. Have you considered inpatient care? Dooce is a great example of somehow who was really helped by that kind of round the clock care. I have a few friends who really benefited from it.

  7. Hi sweetie... I am worried about you. Keep in mind that you cannot be an adequate caregiver to Alex (or Bella, for that matter) if you're not taking care of yourself. You need to figure out some respite care so that you can take care of YOU. Insurance should even cover it (talk to Alex's docs).

    You're in a terribly sucky situation, and I wish someone could wave a wand and fix it for you, but barring that, you have to find a way to stay whole. Right now pieces of you are being chipped away, and if something doesn't give, soon there won't be anything left.

    Thinking of and praying for your family.

  8. Do you have friends (or friends of his maybe) that would come and sit with him while you run errands or God Forbid get that magical mani/pedi? Men are weird about this stuff, though, and his friends might be too freaked out to come around. He probably wouldn't like it anyway, but you do need to give yourself some time away. If nobody is around, you should look into home health professional care once in a while. Maybe if someone just dropped by once a week it would help. Tricking him makes you feel bad but you can stretch it a little maybe - you're going to volunteer up at school, and on the way home you go sit at the coffee shop by yourself for a few minutes. Get crafty!

  9. Oh, Belinda. I'm so sorry it's still that bad. When my wife went through a three-month period of deep suicidal depression I couldn't let her out of my sight, and it was horribly, intensely draining. I imagine it's like what having a newly-mobile toddler is like, only they aren't cute and no one wants to babysit and you can't just put them in the goddamn playpen or crib for a little tiny break. When it was over I pretty much curled up and went catatonic for a while.

    And yours has gone on so much longer than that and it sounds like there's still no light at the end of this horrible, horrible tunnel.

    I can hear how much you love him, and how much you want to fix this, and how much you need your own caretaking right now.

    Is there someone who can spell you? Will he accept anyone else's company? You can only continue to help him if you have resources to give him, and it sounds like yours are dangerously low.

    I know, too, how complicated all of this must be -- negotiating for help, negotiating with him to accept the help, the exhaustion that can render doing all of that, no matter how much it might help in the end, like just too much work.

    Know I'm thinking about you, and praying for you, and crossing my fingers that something starts working, that you're able to get some help and some relief.

  10. So sorry to hear things are so rough at home. Your feelings are absolutely valid and you shouldn't feel guilty for wanting a moment alone. I can't imagine how hard this must be, and the constant range of emotions you must be going through.

    Are there any friends or family members who could step in just even for a day to give you a few hours to yourself? Because really - giving yourself some time to decompress isn't just benefiting you. It's benefiting your whole family.

    Have you searched out any support groups - in the real world or online - for spouses/families dealing with similar situations? Although it's not exactly an escape, it might help to feel connected to other people who are going through the same thing, and maybe they have some success stories/tips to share.

    I wish you all the best in this difficult time - just know that you have to take care of yourself.

  11. I thought of you when I was in Borders & saw this title:
    _The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science: Library Edition_

    Have you seen it?

  12. Can you get some respite care - either a nurse or a family member (parent, sibling) to stay with DH a while. You need to take care of yourself. Are there any mental health agencies in your area? This isn't good for you or your daughter.

    The suggestion of inpatient care is also a good one.

  13. Hon, I don't know who to call in your area, but I'd look for either an adult day care (ie you'd drop him off somewhere) or someone to come in-home and help care for him, even if it's just a day or two a week, to give you a chance to get away, run errands, etc.

    You might try calling the Area Agency on Aging-- I know you're not that old, but they provide those kinds of services for older folks and will probably know who you could call.

    Find someone who can give you some relief. You've got to take care of yourself, even if it's uncomfortable for him, to be able to continue to live in this situation.

  14. Is there anything dayprogram wise in your area? I know they do some alhezimers dayprograms in our town, I just wonder if there is something similar your family could take advantage of.

  15. I see that Blogger really did eat my 3 attempts to comment last night. Check your DMs on Twitter for resource links you may/may not have already seen. If you need to find something else let me know and I'llnsee what I can find. Love you guys and I'm sorry things are so awful for you all.

    Caffeinated Librarian

  16. I cried the other day in the doctor's office because I couldn't figure out how to tie the gown. It was bizarre, but I couldn't stop myself. I guess I am feeling a wee bit of stress, myself.

  17. Your comment about grocery shopping reminded me of a part on Big Love that I saw this weekend, where one of the ladies is talking about how grocery shopping is her ONLY break away all week long and she has a melt down when someone else offers to help. Everyone needs an escape!

    I think everyone here has already summed up anything helpful that I might have added: seek respite care, get some help for yourself, and don't be afraid of where that help might come from.

    It's a little different and a little the same, my husband's grandmother is dealing with some end-of-life issues (anxiety, depression) and she recently had to be sent to an in-patient center for physical rehab and everyone HATED me for suggesting that it was going to be good for her, but it's true and it's totally helping. Not just regaining her strength, but being in a place where people KNOW your issues intimately, because they work with them all the time... I'm guessing that she's finally found a place/person where she can say "you know what...?" and they nod and they DO know. It's hard with family and stuff... we want to say we know/understand, but really, we don't and we can't. We can be sympathetic, but it's not the same as having someone who has been there (and even better: been there, done that!).

    I know its incredibly painful to even think about asking your loved ones to get out and get help (and super scary to seek it for yourself) but it may surprise you how much less scary it is in the end. Let's say that you asked him about seeking in-patient help... and he might hate it, but maybe 2 weeks later he might say "this is where I needed to be." Usually the right thing to do is the hardest.

    Also: my last 2 cents - you have to put yourself first. Which I know sounds awful and crude, but it's true. If you're not healthy/happy/strong, how can you help anyone else? Which is why the respite care, etc. shouldn't be so daunting. YOU NEED IT or else you can't carry on and be supportive of everyone else. And whether that is a weekend away or an hour for a pedicure, you need to take the time for yourself.


  18. I regrettably have no answer for you because, in reading your post, I see myself. I, too, have found myself getting more and more impatient with the (legitimate, I know!!!) complaints of my husband and with the demands of work, my grown children, church obligations - everything! Everyone asks "How's ___ doing?" But very few ask how I'm doing and I really don't care about that but it would be nice for people to realize what we're going through in trying to keep family together and - honestly - to bite my tongue to keep from letting my true feelings out and having everyone think I'm more of a shrew than they already do! You're not alone in these feelings. But I do feel guilty when I hear yet another complaint of some ache or pain when I get home from work, after also going by the grocery for last-minute items and the drugstore to pick up medicine and I realize that I really don't care. It's not life-threatening now - life-changing, yes, but not life-threatening anymore. Honestly, he's capable of doing some of these things and taking some of the burden off of me but just can't seem to tear himself away from the recliner and the TV. Sorry but you gave me a chance to say what I can't say to anyone else because I believe you are going through the same thing. Hang in there and I'll try to, too.