sewfi2
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Post by sewfi2 on Apr 14, 2021 7:40:19 GMT -6
I'm so sorry for everyone's losses and struggles.
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Post by truffleshuffle on Apr 14, 2021 7:41:27 GMT -6
We got news last night that my dads brother had a stroke and he is having emergency brain surgery this morning. Prognosis unclear. yikes, prayers for a successful surgery!
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Post by MelanieCarmichael on Apr 14, 2021 7:47:13 GMT -6
I am so sorry for everyone's losses and struggles and heartbreak.
My heart goes out to each and every one today.
MH lost his father six months ago and MIL's dementia went from mild to much more significant almost overnight (trigged by FIL's death) and she is being placed in AL today because we simply cannot keep her in her home safely anymore. So this has been weighing heavily on all of us. And my mom, who lives three hours away, has had a lot of health issues and has needed to lean on me a lot more (even though I have 4 other living siblings who live within 15-20 minutes of her).
So it's...been a year (and a half).
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Post by downwarddog on Apr 14, 2021 7:57:24 GMT -6
*poof*
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cnf
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Post by cnf on Apr 14, 2021 8:09:55 GMT -6
I was just curious. After watching my friend lose her father it just really stuck with me. I don't mean to burden you further. Oh no, it's fine. It's a weird spot to be in because I have processed losing my dad and I am at peace with that but now this on top of it is an extra layer of wtf. I hope your friend is doing okay. Was her dad young? I found my dad's passing to be.. a relief, for lack of a better phrase. And such a weight was lifted in my whole family. And we were so happy he wasn't suffering anymore. We went through the grief phases when he was sick so his death wasn't a shock. He was in his sixties. He had hepatitis C as well (pricked with an infected needle while working as a surgerical tech) and lived with that for decades, almost dying a few times from that. He was such a good person though. His hobby was making cake boss style cakes and he made me the coolest cake for my bridal shower. He was in hospice for weeks before he passed and I know that was excruciatingly difficult on my friend and her family. It's such an ugly disease.
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cnf
Ruby
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Post by cnf on Apr 14, 2021 8:10:58 GMT -6
We got news last night that my dads brother had a stroke and he is having emergency brain surgery this morning. Prognosis unclear. Sending healing thoughts
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cnf
Ruby
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Post by cnf on Apr 14, 2021 8:26:49 GMT -6
I'm nowhere near where some of you are but I've been very woe is me lately.
My grandfather passed unexpectedly last week. He was sick and battling dementia, but we did not anticipate his passing when it happened. We went to the services out of state over the weekend and it was just so much. And my poor girls, at only 3 and 5, have both now been to three funeral services (both of my grandfathers in the last year and my friend's father with ALS). I feel sad about that.
I'm also struggling heavily with mom guilt over DD2. She injured her hand badly on our treadmill last June because I left the gate around our workout equipment open and did not see her come up behind me while I was running. Multiple hospital stays and surgeries, multiple skin grafts, extensive follow up and OT. At this point we've hit an impasse it seems. She still does not have full flexion or extension in two of her fingers, but OT feels like they're basically working at maintenance now and just trying to delay inevitable regression cause by growth. Her natural skin will grow faster than the grafts so they will tighten over time as she grows. She's only 3.5 so this is going to be A THING until she's done growing. She needs a scar release surgery, but they don't want to do it yet because she might need it multiple times over the next however many years and they don't want to "burn that bridge just yet". I just feel awful. She has jacked up finger because of me and needs another surgery and regular OT and scar massage and this is going to be a decade plus long process. We'll have another surgery reassessment in June at the one year mark and it just hurts my heart to no end.
Sorry, that was a lot of word vomit. I just don't know how to release the guilt.
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Post by Carmichael on Apr 14, 2021 8:29:40 GMT -6
I am so sorry for everyone who have suffered losses and struggles.
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Post by Rusty Red on Apr 14, 2021 8:31:32 GMT -6
cnf, I know how much you have struggled with this since it happened. I'm sorry you are still feeling so much guilt over it. You know accidents happen with kids, but I know I would feel the same way as you. Please try to give yourself some grace on this, I hate it that you feel so awful still.
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lizblue
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Post by lizblue on Apr 14, 2021 8:35:14 GMT -6
Sending love to all. downwarddog, thanks for sharing all that. I'm glad you are acknowledging the place you are in and I want to reiterate that depression lies. You are valued and valuable. Don't hesitate to reach out if you need help. cnf, it was an accident. We are human. You're a good mom and I'm so sorry you had to go through that. Your DD will be ok and you will make sure she always gets everything she needs.
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Post by fosterlove on Apr 14, 2021 8:46:32 GMT -6
That would be terrifying. I'm sorry it worries you. My best friend lost her father to ALS a little over a year ago now. It was gut wrenching watching his decline. It's such a horrid disease. Did you look into the cost for generic testing? I know everyone is different, but it would drive my absolutely insane to think it could be genetic and not know. Or is ignorance bliss in this situation? It's such a hard choice, I'm sorry you're saddled with this black cloud. It is a hard choice. I'd rather know but my mom thought I was crazy for wanting to know. Because knowing you have the gene doesn't even guarantee you'll get it. So would that be even more anxiety? I don't know lol. I didn't look into cost, I didn't do anything once they told me insurance wouldn't cover it. I was actually pregnant when I finally looked into it cause we were doing the pregnant testing and the genetic counselor asked me if I wanted it. I guess I could always see what the cost would be. I tossed around the idea of getting genetic testing for breast cancer for a long time before I went through with it. I had to be at a place that I was ready to deal with what it would mean that I was positive. In the end, with help from my therapist we worked through the what ifs. I did get the test and even then it took me a while to open the results. You truly can't put anyone else's timeline on for if/when you are ready for that.
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Post by cabbagecabbage on Apr 14, 2021 9:41:15 GMT -6
My heart goes out to everyone here. downwarddog I am so glad you shared that and so sorry it happened. Please keep going. Your children need you and you make the world better by being in it. I made a thread a week or so ago but we’re trying to help my H’s grandmother have a safe home as she is getting physically weak in her 80s while my H’s semi-estranged mom is trying to get the grandma to move across the country to live in a trailer so she can take all her money. It’s getting intense and grandma doesn’t want to go. We’re team grandma. It’s about to get ugly. Then my own father’s girlfriend contacted me to say she’s worried he’s losing his memory and not caring for himself. He seems fine. Girlfriend likes to throw around her power so I don’t know what to believe or do. Universe, could you kindly split up these adulting and helping the elders scary crap? Oh, no? Cool.
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TheoV2
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Post by TheoV2 on Apr 14, 2021 9:47:59 GMT -6
Please don't feel as though any of your burdens are less than anyone else's. If it is a heavy weight on you, then this is the place to release some of it.
My heart goes out to all of you.
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Post by coffeeandwhine on Apr 14, 2021 10:02:47 GMT -6
downwarddog while you’re waiting for your emergency session do you have someone you can check in with here or irl? Just a quick “I’m ok for now” daily text or something. We’re all here for you. Sending so much strength and compassion to everyone struggling right now.
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Post by canteverremember on Apr 14, 2021 10:02:47 GMT -6
downwarddog huge hugs I’m very sorry you’re struggling so. I’m glad you reached out for emergency session but please if you get to thinking those thoughts again before session please reach out to any one at all to talk, that is scary and you deserve to be healthy. 💜
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sewfi2
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Post by sewfi2 on Apr 14, 2021 10:17:27 GMT -6
This isn't nearly as heavy as death, but it's been on my mind lately.
ETA: I used some words/language below that I realized will sound really harsh, but it really only applies to my feelings about my parents, not people with SN in general. And if they hadn't allowed certain things to happen in our home, I don't believe I would this way about them (I didn't when I was younger, before I realized how fucked up things were at home).
The short of it is: I have special needs parents. I've spoken about them before, mostly in my bmb, but I tend to play down a lot of it. Partly b/c it's embarrassing, partly b/c I think so much of what happened growing up with them sounds unbelievable to a reasonable person. My parents went to and met at a special needs school. I have never been told their official diagnoses, but mh has a phd in cognitive neuroscience (he's not a clinician, and this is just his opinion based on his education and observations of them; he's the best source I've got in this), and he has put it like this: they have clear cognitive deficits and my mom is likely has asd (based on current behaviors and anecdotes from my grandma, before she passed). My dad also had a tbi (mostly frontal lobe damage) in late 2001 which really complicates things. I mostly avoid thinking too much about it, b/c I just end up feeling incredibly lonely and angry. I'm angry b/c of the things that happened in our house that lead to me developing pretty severe depression and incredibly low-esteem (which I now realize is the reason I believed someone would want to use me as a placeholder, there was no way teen me thought anyone could like me; while I've gotten better with the self-esteem, I'm still very suspicious when people are nice to me, even while taking basically every other statement at face value). I'm angry that the main cause of that, my brother, doesn't have any responsibility to/for them now. I'm angry that I was even born into this family. I'm angry, b/c if they were "normal" I could just cut ties and walk away forever and it wouldn't be as big of a deal. But how much can I "blame" them? When they aren't much more functional than maybe young teens? I haven't found any support groups or documents or anything for children of special needs parents. Logically, I can't imagine that I'm the only one? But maybe I am?
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Post by downwarddog on Apr 14, 2021 10:31:45 GMT -6
downwarddog while you’re waiting for your emergency session do you have someone you can check in with here or irl? Just a quick “I’m ok for now” daily text or something. We’re all here for you. Sending so much strength and compassion to everyone struggling right now. I do, thank you.
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adelbert
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Post by adelbert on Apr 14, 2021 11:15:06 GMT -6
sewfi2 I couldn't read and not post. That sounds incredibly difficult, and what a weight that you have to carry. And even harder to deal with feeling so alone in it all. You aren't alone though. Unfortunately I only found support online for people like your parents and not the children affected but there are definitely others out there. I'm sure that doesn't help you at this moment though. I'm sending you a lot of loving vibes and I also hope you know that your feelings about your childhood and your parents are totally valid.
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Post by truffleshuffle on Apr 14, 2021 11:31:39 GMT -6
sewfi2 - I'm sorry, that sounds really trying and I'm sure you have all sorts of mixed emotions. Do you have a therapist? i wonder if they might be able to share some resources or support groups? sending you strength
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Pizzaslut
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Post by Pizzaslut on Apr 14, 2021 11:34:59 GMT -6
I'm really just sick of people in my family dying. I lost 3 people in 2017 with one being my BIL who OD-ed. I didn't think it could get worse but in November within a week of each other, my uncle shot and killed himself (this honestly still takes my breath away because it was so shocking) and then my FIL died of pancreatic cancer (at least we knew that was coming?). And then we just lost my aunt the day after Easter. She fought cancer that kept coming back and we knew she was sick but it was still startling when she was sent home with hospice the week before.
I feel like I can't grieve because I will completely lose it and I'm afraid I won't be able to function. I'm already struggling with other stuff not even related to this stuff.
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TheoV2
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Post by TheoV2 on Apr 14, 2021 11:40:35 GMT -6
Pizzaslut I can really relate to all of that. I feel like I've been in a limbo with grieving losses in my family because once it starts I won't have control over it.
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sewfi2
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Post by sewfi2 on Apr 14, 2021 11:50:39 GMT -6
downwarddog, I'm so sorry about everything. I hope your daughter's health continues to improve, and I hope your appt goes well. Pizzaslut, that's a lot to take in such a short period of time alone. I understand not wanting to immerse in it, to grieve. I hope you find peace soon though. adelbert & truffleshuffle, thank you both. I don't have a therapist at the moment (though I should start to untangle everything). I did try to have them do family therapy with me for awhile (about a year ago), but it didn't go anywhere (they spent most of the time essentially not wanting to admit their issues, which I get but doesn't help in the setting, and blaming everything bad on my brother as if he grew up in a vacuum and just magically appeared in their lives). The therapist was nice and tried hard, but she was at a loss on other support options for me.
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Post by peppapig on Apr 14, 2021 12:05:12 GMT -6
My heart hurts to read about the burdens and responsibilities you ladies are facing. The fact that you carry this, and still are the heart and soul of your families is truly a testament to your strength and bad-assness. I hope that - in showing patience and grace to others - you find remember to show some to yourself. Hugs to you, ladies.
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kmkd
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Post by kmkd on Apr 14, 2021 13:57:20 GMT -6
sewfi2 I went to school growing up with a girl in a similar situation. I didn’t know her very well but I’m pretty certain her parents both had cognitive delays. Just one anecdote but - you’re not alone.
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sewfi2
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Post by sewfi2 on Apr 14, 2021 14:29:25 GMT -6
kmkd, thank you for that! I mean that sincerely. I mean, I hope her situation is better, and maybe it's dumb to feel like this, but even the idea that there is someone else is wild. Unless I'm that girl in which case lol:sob. You didn't go to school in Pinellas county, by chance?
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Post by Deleted on Apr 14, 2021 15:25:16 GMT -6
sewfi2 I'm sorry There are plenty of people out there with experiences like you. I don't know of any support groups but I hope you find some support that you're craving and needing.
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claudia
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Post by claudia on Apr 14, 2021 15:57:19 GMT -6
Last year, a young family member died suddenly. Since then we’ve found that we have the biggest known family cluster of a certain genetic mutation. I’m waiting on mine and my kids’ test results. While we were waiting to get the tests, I was hospitalized with covid. I had some abnormal heart tests while hospitalized and so now I’m going through more testing. My kids have been basically living with my parents the last month because I’m not strong enough to take care of them, and I keep thinking dark thoughts about what if I die and my last months I’m not even with them? I know that’s not likely, but it’s just been a lot. Basically the last 9 months of our lives has been dealing with grief and health problems. I have the worst nightmares lately.
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Post by Sweetjane on Apr 14, 2021 15:58:03 GMT -6
sewfi2 I just want to give you a big hug. Thank you for sharing your story✨
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Post by newspapers on Apr 14, 2021 16:00:27 GMT -6
Damn. Reaching out across the internet in support for everyone. PDQ This thread is timely, but mine isn't life or death. But it feels huge. So, my husband and I haven't always gotten along super smoothly (married over ten years). The pandemic, obviously, has made that worse, though he does do more around the house now (which might honestly be contributing to the flare-ups). He works a very demanding job which hasn't let up since he began years ago, not even this past year. He is working from home, from the bedroom. I am certainly not blameless in our dynamic--I can pout, am bad at saying sorry, and don't want to argue over every little thing so I can stonewall--but certainly since the pandemic started, he has been even more irritable and critical of me and our kids. I have said to him multiple times, it's as though I keep trying to do everything you want and it's still not enough, and I can't just keep smiling through it all (when he asks why I'm unhappy). My own mental health began to take a nosedive around 2018 (longstanding issues, but became worse), and I went on meds at the start of lockdown last year. I have had to face and come to grips with a lot of the stuff that was underlying my own issues, but I have been avoiding facing our struggles head on. I feel like I can never keep motivated to have another hard conversation once he has decided a disagreement is over and "we're fine". I asked him to go to counseling years ago, and he refused. I really want to ask him to go to counseling again, but I am so scared to bring it up. (Something happened last night that, for me, was the straw that broke the camel's back, but he is brushing it off.) And now he is being nice and I am so tempted to just ride this wave, but I know it's going bubble over again. I had actually weaned off my therapist last month after 1.5 years and I called her again today and ended up sobbing loudly in my (thankfully private) office at work. I increasingly have felt like a shell of myself over the past few years and I know I need to do this, and I DON'T WANT TO, because I am so confident he'll refuse counseling with me and then I'll have to fight tooth and nail to get him to cooperate with me on any next steps (like separation). \ Anyway, if you've read this far, thank you TLDR: I am scared shitless to basically demand my H go to counseling with me because I have had enough.
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kmkd
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Post by kmkd on Apr 14, 2021 16:37:49 GMT -6
kmkd, thank you for that! I mean that sincerely. I mean, I hope her situation is better, and maybe it's dumb to feel like this, but even the idea that there is someone else is wild. Unless I'm that girl in which case lol:sob. You didn't go to school in Pinellas county, by chance? I did not! I just looked her up on Facebook and she’s married with children and looks happy. I felt like a weirdo telling you that, but your post reminded me of someone and I just wanted you to know you weren’t the only one out there.
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