The Sound of Silence.

It has been an extremely long and hard week. I am pretty beat down and exhausted so I doubt this will be one of those pretty and eloquent posts.

Alzheimer’s is fucking hard. Even on a good day it is hard. On a bad day it is soul-sucking.

GM had a relatively “normal” Tuesday. She had no memory of spending all of Monday in the hospital, no memory of the things that brought us there, and no realization that she needed to take it easy. But I was actually happy that she was doing so well. I mean who wants to remember hours and hours and hours of hospital hell? So Tuesday was calm, maybe even mellow.

Wednesday things started to shift.

By Thursday it was bad.

And this is the stuff that is hard for me to write about. I mean who wants to document and put up for the world to see horrible things that their Grandmother did or said? Who wants to relive it as she struggles to find the right word that would convey just how awful and mean and tense things were. Not me. I just can’t.

Yesterday was just shit.

And I know that her violent mood shift was totally connected to the chaos that was her Monday. I know that when she acts this way that it is not personal (even when that is how it manifests).I know that it is just her mind trying to claim some sort of control over a body that is no longer always connected to the mind.  I know that when things are at their worst she is absolutely not culpable. And I grapple with all of this as I try to not cry or retreat or talk back. I try to go emotionally limp and push the Granddaughter part of me away and just focus on being a good caregiver. But I kind of suck at that. I always cry.

I think it is especially hard for me right now because I am just one big blob of emotions. I fucking cry at everything. Even the idea of sad things makes me cry. So being in a situation that is actually 100% authentic, real-life sad just about destroys my foothold on sanity.

On top of care-taking during a rough week I also have that looming fear that will always, always, always follow around an infertile. Always. It is the fear that the really horrible stuff is right around the corner. I fear that the Snork was just some mind trick, that it is a twisted and belated April Fool’s. When I find myself doing things like dealing with my insurance (which is a very large post that may or may not be written for public consumption) or scheduling an appointment for for an OB I feel like someone will stand up and call me a liar. The fact that I have an OB appointment next Wednesday just blows my fucking mind.

When does the bliss come in? I think I am just still in shock about it all…

And as I deal with all of these conflicting emotions- the stuff from GM- the feeling like a fraud- the nonstop weeping and peeing- I find that I retreat. I tuck away and hide myself with like this blanket of shame. Even sharing all of this now makes me feel a bit raw and uncomfortable. Like I should just buck up and deal. But dealing, as I am finding out, is hard.

Comments

  1. sabrina says

    ok the bliss comes at around 20 wks when you have that great anatomy scan, and you find out the sex (assuming you haven’t had an amnio first) and when, soon after, your baby starts to make herself known (i assume you are having a girl.) i felt like a fraud for many, many, many weeks. i still do some days. but i promise you the bliss will come. when you’re in the grocery store and someone smiles at the sight of your belly or when friends start sending you little baby gifts or when you realize that it’s safe to start figuring out the nursery. you’ll get there cali, you are doing great. the first trimester sucks. i hope that you are textbook, like me, and that at 12 weeks… poof! the suckiness goes away. and guess what? we’ll all be there for you, rooting you on!

  2. Frannyo says

    You know, when I finally concieved, I didn’t know for a few weeks – but those weeks were the most emotional of my life up to that point. It was all real, around real things, but I just FELT things much more strongly/clearly, and I cried a river over things I would have stuffed a month or two before. I don’t know why/what that was, but I’m convinced it helped me keep that one, or conception, though unknown to me at that time, helped me feel things more clearly. **

    I’m so sorry things with your grandmother are making you sad and frustrated and taxing your patience, but I’m glad you’re just flat feeling it and continuing on.

    **Wow this all sounds super awkward and may imply things I’m totally not implying – writing clearly apparently is not a strong suit. Just know there are lots of people pulling for you, your mom, your grandmom, and your little person.

  3. says

    We’ve been close to several neighbors while they dealt with Alz. It’s hard enough taking care of an elderly person who knows what’s going on, but when they don’t it’s ten times worse. :(

    And, you’re no fraud. You’re just the luckiest person I know right now. :)

  4. says

    Being a caregiver for a loved one is much more than being a caregiver to someone that is not… Its impossible not to hurt as you see your GM hurt and to not take things personally, because you are so personally involved (even if of course she doesn;t mean those things). What you are doing is incredible, and I am sure that she takes so much comfort, when she can, in having your presence there with her.

    And then on top of it you are pregnant!!!! Which is exhausting and exciting and terrifying and everything all at once… So I am sure you are a mish mash aof a million feelings all at once…

    Just sending a big hug from north of the border and wishing you good luck at your OB appt…

  5. says

    Oh, honey, thinking of you. It is so hard.
    Co felt like a fraud all the way through the bigger ultrasounds….she had a whole fantasy about someone sneaking a videotape of someone else’s belly onto the screen.

  6. says

    I love you, Cali. You know this. But it never gets old hearing it.

    I never could separate the granddaughter from the advocate. It’s always enmeshed. And it’s fucking hard.

    Sending you strength, love, and peace.

  7. says

    Sometimes a part of bucking up and dealing is breaking down and allowing yourself to have a moment, or even a whole run of them. Sometimes you just have to empty some of the bad shit so that you’ll have room to take in more on the next day. I am here for you, Cali. We all are.

  8. says

    Oh hun, I am just so sorry. I wish I could be there to hug you and sit up half the night listening to you vent.

    Sending a lot of love your way.

  9. says

    My bliss happens when they’re born. I’m still not positive that I’m still pregnant. The mind works weirdly, I suppose.

    And Cali, it’s okay to cry. There’s no reason you shouldn’t. It’s fucking hard and somedays it fucking sucks and it’s okay to feel that way. I’m so sorry, sweetie, I’m sorry it’s so hard right now.

  10. says

    just because you worked so hard for it doesn’t mean you are supposed to buck up. sometimes i think pregnancy is even harder and less appreciated by infertiles, because they are waiting for the rug to be pulled as it has so many times before. And there is always the conflict between feeling like one is supposed to be grateful and the reality, which kinda sucks for you right now. Dealing with the GM stuff is brutal on your best day…but when you are a heap of hormones?? All I can say is complain away. Bi-atch all you want. You are allowed to even be terrified that you are going to have a baby. Pregnancy sucks. It is weepy and messy and out of control. It is scary and hellish sometimes. Yes there are the good times, but just because you worked hard for it doesn’t make it less real, and in reality pregnancy is terrifying, especially in the beginning. JesusH. I’m here and giving you permission to feel all the stuff you are feeling PLUS the stuff you are not blogging about feeling PLUS the stuff you are not even admitting you are feeling. Love you.

  11. says

    I am so glad you put this out there, however uncomfortable it might be. Because it is GOOD FOR YOU to do so. DO IT MORE.

    My bliss came when he was about six months old or so. Yes, there were truly some blissful moments in the latter half of pregnancy after amnio and anatomy scan. But there was also pain and fear ALL THE TIME. Even when the fear would subside for a moment, there was pain. Even if I felt halfway decent, there was fear. But now? There is BIG bliss.

    Love you so so so so much.

  12. says

    Oh, sweetie, I hate that you are hurting so much and that your GM is so fragile. While I can’t relate to the complete and utter selflessness that you have, I saw that wonderfulness in my mom caring for my grandparents. It takes a special courage that you have. I know you are being strong. Sometimes you just need a good cry. Don’t forget to take care of yourself, too.

    Hey, at least you’re peeing like a good preggo!

  13. says

    *hugs tight* While I don’t know how hard it is from personal experience (though my great-grandmother had Alzheimers, and my mother tells me the stories, my own grandparents passed away before it did/would have manifested itself), I have a good friend who went down this road, and spent years as the primary caretaker for her own parents, with similar hardships.

    All of which is to say, it’s totally understandable to not want to have to rehash it and such. But if you ever need to, I don’t think any of us will every think any the less of you for it. *hugs*

  14. says

    The first trimester left me wanting to cry or sleep or both simultaneously. And so far, more than halfway here, my fear hasn’t gone away. I can have as much reassurance as it is possible to get (and things are going textbook perfect for me at the moment and have been for the most part) but that fear is something I fight on a daily basis. That takes a huge emotional toll, too, that I had to step away from in order to see happening to myself. Plus, you have a lot of daily stress on a normal basis, and even more so this week.

    Please let me know if I can help. I can make phone calls like a champ (hello, this is Jen from Cali’s office) and I am happy to do so anytime you need them.

  15. says

    It must be so hard to be dealing with your GM’s turn for the not so good while at the same time dealing with your pregnancy.

    As Lo said, I used to have these thoughts when I was first pregnant. Like, “I’m really fooling everyone. Hey, I switched my blood for a pregnant lady’s. That’s her beta, not mine. Or that’s not my uterus, I swapped in a tape of someone else’s u/s. That’s not my embryo.” I don’t know why. But I felt like a fraud, too. I remember my first MW appointment when it was too early to hear the heartbeat and we didn’t hear it, and I just waited for the MW to kick me out saying, “You’re not really pregnant. Why are you wasting my time?” But she didn’t. And I was. And so are you. And you’re not a fraud.

    xoxo

  16. says

    you have been on my mind and in my heart all week… i am glad you wrote this out, and tho you are feeling raw, i think it is good for you to have a place to unload all of this… your shoulders are only so strong on their own, and ours all put together can carry A LOT… i feel like i should have more words but i dont… just know you are surrounded by so many hearts that love and and hands to squeeze when you need to and we will prop you up. you do this for all of us so much, now it is your turn.

    love you, my friend,
    gypsy

  17. says

    I am truly sorry that your GM has been having such a terrible week, in turn exacerbating all your to close to the surface emtions. I will pray that this weekend will be the beginning of calmer waters for you all. You asked when the bliss sets in, as a former fertile now infertile, my bliss set in around 20 weeks. That was the beginning of the most emotionally peaceful times in my life. I think of you daily and continue to say a prayer for a healthy Momma & Snork.

  18. says

    After having five pregnancy losses, I don’t think there was a week in which I felt calm or relaxed during my “successful” pregnancy. I kept thinking that once I hit 12 weeks, I’d be OK. Then 20 weeks. Then 28 weeks. Then 40 weeks. It’s OK. Infertiles experience a different kind of pregnancy than the rest of the world. It’s happy – but happy in an infertile’s way.

    As for your Grandmother, I am very sorry that you are going through such a challenging time. My grandfather had Alzheimer’s and it was very difficult.

  19. says

    Cal…have only just caugt up with you so I am simultaneously blown away with your happy up the duff news and deeply saddened with the difficulties and struggles for both you and your beloved grandmother. The happy news is wonderful and yet I completely understand the not believing, waiting for the other shoe to drop mentality. It';s for this very reason that I was never able to book myself into any form of birth class and had hardly any relevant equipment when the baby was finally born. And your poor darling grandmother, so hard for all of you. You are a great carer, crying or not, and of course you will cry because she';s not just your client, she’s your grandmother. Despite the conflict days your grandmother is surrounded by your love and I am sure that she knows that on a deep level even if some days it seems lost to her.
    And interms of trying to balance these things…all being well yoour baby will grow whether you are happy or not, whether you are feeling positive or deeply pessimistic. This particular train has left the station Cal and you can’t control the journey. There is a comfort in that I think.

    xxxx

  20. Tex says

    Sweetheart, more than anything, I wish you could just sit back and enjoy this precious gift you have inside you. With all that’s gone before, I know that’s almost impossible…almost. You decide how to feel, you are the one to decide your life. You can let fear dictate it…or you can love lead it. A little hope goes a long way sometimes. I’m sending lots of love and prayers your way, darlin’! You deserve it many times over!

    I would imagine your grandmother is scared shitless as well. It’s hard to watch someone who was so strong, and who you love so much, just become someone so foreign to you. I have no words to convey the empathy I have for your family. Your in my thoughts often even though I post rarely. =) You give so much to everyone and I believe that it will come back to you. You are a precious gift to your grandmother and mother and to all of us. Never forget that.

    We’re here to listen whenever you need to rant and rave. It’s what friends do. Hang in there, C! We love ya!!!

  21. says

    Please don’t feel like you have to have a blanket of shame as your only comfort. We are all here to listen to how hard it is, so don’t be afraid to lean on us. It sounds like it effing sucks ASS at the moment. I’m so sorry that you, GM and mom are having so many Alzh. related difficulties. I hope things calm down real soon.

  22. Angie says

    I could have written the last haft of that post word for word. It’s fucking hard and you feel like you just have to buck up – but you can’t. You continue to cry and think of all the bad things that will eventually happen. You can’t even think that they “might” happen as you know with your luck and your history – that they will. Then as you approach 14 weeks – the “feeling crummy” starts to fade and you’ve had a few OB appts and things start to look up. Now, at 21 wks I’m starting to think that I *might* bring home a baby at the end of all this. But then as SOON as I start thinking that, my mind says “listen up you dumbass – reality check!! – something will go wrong!” So even though I’m feeling kicks, anticipating gender u/s’s, doing the nursery – I’m still not convinced things are going to work out. I hate IF and I hate my body. The only thing I love right now is that little life inside me that I hope and pray will get a chance b/c some days my mind still feels like it won’t. =(

    As far as your grandmother – that is so hard to read. I don’t know how you do care for her and stay emotionally uninvolved – I know it’s impossible. I have to give you major credit b/c I don’t know how I could do it. The love that I read on here between the two of you day after day, post after post, just shows me that there are still good people in this world! I hope that her good days start outnumbering her bad days again – Hang in there!!!

  23. says

    I’ve been thinking of you, lady, and I’m glad to “hear” from you, even if you don’t have the most wonderful report to give us (of course, any post from you right now that doesn’t involve bleeding is a good thing in my mind, and you totally kicked ass in that department–WELL DONE!). Sometimes life just sucks, and you shouldn’t feel bad about telling it like it is. I can’t speak for all of us, and trolls are always out there, but MOST of us are reading this because we care about you and your family, and we aren’t here to judge or condemn. I would actually be curious to read as much as you care to share about GM’s behavior and how the Alzheimer’s is affecting her, because maybe it will help me understand my father a little better. Which isn’t to say that you should feel obligated to tell us a dang thing, just that there ARE people who would find that interesting and important to read about. I’m sorry your insurance company is giving you grief, and I can’t wait to hear how your OB appt. goes (please tell me they’re going to do a u/s)! I think you’re doing an amazing job of caring for your GM, your fetbryo, and yourself during this difficult time, and wish you all the best.

  24. says

    First of all, I’m so sorry that you are all going through so much with your GM…sorry for you…and sorry for GM. My GM had the same, and I remember how hard it was. I wish that it could be different. Secondly, I totally get the feeling like a fraud, waiting for the other infertile shoe to drop, wondering when the bliss comes in, feeling like you should just “suck it up and deal,” etc. I’m 17 weeks pg and I STILL feel those things. The bliss DOES come in–if only for moments–but I will say that there are times when I feel more secure with this…when I believe that this is actually happening…when I feel more, I don’t know, deserving of this. And I think we ARE sucking it up. It’s just harder for us because we live in the world of infertility, with all the associated battle scars. Whatever you are doing, you are doing FINE. Remind yourself that it won’t always be this hard. And that the light at the end of the tunnel is magical. Thinking of you.

  25. Salome says

    You’re doing the right thing. It doesn’t harm GM in the slightest if you protect yourself by going into “caregiver” mode. She’s being well cared for and you are less stressed.
    I became pregnant with my son after five years of being infertile. I remember the awful fear that something would go wrong. The fear was with me every time I went to the bathroom and checked my panties for blood. It was with me every time I noticed he hadn’t been moving for awhile or when people told me my abdomen looked small for someone at my stage of pregnancy.
    And the crying! I wept over the Pillsbury doughboy. He was so small and vulnerable and pathetic. I cried over other people’s babies because they were born and mine wasn’t yet. I knew hormones were the cause of all the crying but that didn’t prevent me from weeping.
    I hope you’re resting as much as possible and doing thing you like. GM is fine; she doesn’t mean the horrible things she says. Two minutes after she says something that wounds you to the quick she’s forgotten all about it and it’s 1958 in her head.
    You have a lot to look forward to. Just take it easy. Watch TV and read blogs. You deserve it.

  26. says

    so sorry for what you are dealing with. incredibly difficult doesn’t even come close. don’t forget to take care of yourself too.

  27. says

    We’re all pulling for you. This is so hard to be dealing with this turn for GM, and would be hard under any circumstances, but it seems like pregnancy hormones (and the fear of something going wrong…boy do I know that one) just make everything worse.

    The fear decreased for me when I saw heartbeats at 7w (and was partially replaced by twin-fear.) Both of those decreased again at 12 w when they started getting “cute” on u/s (i.e. less blob-like) and I started accepting my new reality. Since then the fear part keeps decreasing, but it’s still there. Staying pg after my scare at 16w helped. Still being pg at 24w helped. But B didn’t move very much yesterday, and I was starting to worry about her. Honestly, at this point, I’m not sure I’ll relax till we’re all home and safe. The fear does get better though, in little increments. Oh, and I cry over everything in the world.

    So rest as much as you can, eat whatever sounds good, and know that we all love you.

  28. says

    Sending you a little bit of love.

    I think bliss hit me around week 24 when I stopped saying, “If we have this baby,” and started letting myself say, “When we have this baby.” I hope it comes sooner than that for you.

    I am so sorry about GM. That is so hard and you are so amazing.

  29. says

    I’m so sorry that you are coping with your GM’s disease. I send lots of hugs to you and GM and your mom.

    About feeling like a fraud. I still feel that way and I’m in my second trimester. I sometimes feel like I’m just faking it….the nausea, the fatigue, the emotions. the peeing and even the expanding belly. I have ultra sounds and I know the little being is growing in there, but I wonder when someone is going to call me on my big make believe. I think it is really normal to have these feelings.

  30. jean says

    I think of pregnancy as one long marathon. The first few weeks are straight uphill. There are these hurdles that you jump over, and as you complete each one (first beta, second beta, seeing heartbeat, etc), the road gets slightly easier. As someone who has been at both ends of the fertility spectrum, I can say that infertility adds an extra weight around your neck as you begin that marathon. You don’t believe it’s happening. You keep waiting for the other shoe to drop. And my favorite is the anger. Yeah, I was finally pregnant and should have been on cloud 9, but my feelings of resentment towards the stupid insurance company and how much I had to pay out of pocket because I wasn’t “legally” married had not dissipated.

    On top of all this, you’re dealing with such a difficult situation with your grandmother. I can only imagine how physically and emotionally drain of this is.

    As others have said, feel what you need to feel, except for guilt. Don’t feel guilty because you’re not enjoying every minute of this hard-fought pregnancy.

    Peace and love to you.

  31. Amy says

    Cali, as an occupational therapist working in assisted living facilities, I see and work with so many caregivers, on a daily basis. What I can say to you is that you are doing an amazing job taking such loving care of your grandmother. From all you write, you are the most sweet, professional, sensitive, loving and intelligent caregiver I have ever known. And…..I have known a bunch in my 8 years of working thus far.

  32. says

    Just wanted to say how sorry I am that things are so bad right now. Unfortunately I can relate to being pregnant and paranoid and dealing with a grandmother with Alzheimers and I wish that I knew the magic words to say to make it better for you.

  33. says

    I’m just coming back into blog land after vacation but I wanted to say that I am thinking of you and GM. I’m sorry things are so hard right now.

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