This sounds so much like my husband's early days with young onset dementia. It's all so hard, and most of it is stuff others just can't see (hence the friend's very unhelpful assessment of Mr. J.), which makes everything harder.
Thank you, Pam. It helps, being here and having others who know what this is like. No one I know "in real life" has ever seen anything like this - including me. I appreciate you.
As the wife of a lovely human with a TBI, I can't even begin to tell you how much I relate to this story. It's seemingly innocuous. So what? He went to the wrong building. He was late. He doesn't remember to make his lunch. Except, it's all those things, every day, always. And until you live it, you can't possibly understand what it is to be THAT overwhelmed by seemingly innocuous stuff. I see you lady. 💓
Jess, I appreciate you. You are right - "Except, it is all those things, every day, always." Thank you for standing with me. I really appreciate your presence and understanding.
Oh Anne, I totally agree with Jess in this! There is no way I can tell you I understand what you are going through. But I believe you and I see it is so hard and I am so sorry this is such a long road to walk down. I do know you are not alone in your suffering. Your gratitude for the support is beautiful and so are you. 💕
Wow ! I have no idea really on a day to day level how dealing with this must be. But I can very much empathise. It must be quite overwhelming at times. My partner was diagnosed 4 years ago with inoperable prostate cancer, with a prognosis of 5 years. On my bad days I struggle hugely with this. But like you said, nobody in your ‘real life’ can relate to what’s going on for you; can relate to how you feel or to your fear. I have found a sometimes overwhelming need to be ‘witnessed’, to be seen, heard and understood ……. and it doesn’t happen very much. You need some support. I’m so glad I found your Substack. Hopefully you can find some support here, and through your writing will find some extra strength.
Has anyone told you yet the doctors don't know what they are talking about? and also that you could get hit by a bus tomorrow? I just want people to understand the weight of ambiguous loss and anticipatory grief. I see you, Lee Williams, and I ache for you.
Wow I don’t even know what to say. It’s so frustrating when people interfere like that, it’s not helpful at all!
I’m sorry you’ve had shitty therapists, not what you need and I imagine living in overwhelm the idea of having to try again is exhausting. It took me a while to find a therapist that was a good fit, I just had a flash back to a very stern therapist who just sat and stared at me whilst I cried 🙈🙈
I’m glad at least this professional was supportive, this is indeed complex 💚
Well, I am very good at following the rules. You must have asked for said introduction. I am grateful for you, too. I was in Rehoboth this summer and thought about reaching out, but thought it might be too forward. But I will be in Rehoboth next year as well, as my friend had a beach house there. . . .
Anne, I hear you too. It is a strange place to be living in day to day. My husband had brain cancer. The obvious outward sign was his lost mobility which happened in a few weeks. He conversation skills only diminished much later. We would discuss things he needed to do ( like making certain decisions) and he would agree but he could not execute the related task.
You feel so helpless because you both know the ending all the while hoping to wake up from the nightmare or for some miracle to restore his health.
Robin, yes, I feel so helpless. Letting go of imaginary control has been a huge thing for me. Because I don't, in fact, have any control over this. Thank you for seeing me.
Anne, these days really suck and I'm sorry they are part of your norm lately! I do hope things will get a little better. Please let me know if I can assist in finding you care or self care for you. It's so hard and I know you know you need to care for yourself but knowing, doing, and having the fucks, time, and space to do it; is a whole different beast!
Teyani, next you are going to tell me that my therapist telling me her daughter-in-law died of (insert sotto voce) *alcoholism* is also unprofessional!! LOL. I appreciate your support and your information.
Oh, no, Teyani!! I loved your comment. I was just building on it. Please don't feel bad. Your intention was important and valued. I just don't have the energy to report her. Too much other stuff going on.
Oh, gosh…what a load you’re carrying. That’s immense.
This sounds so much like my husband's early days with young onset dementia. It's all so hard, and most of it is stuff others just can't see (hence the friend's very unhelpful assessment of Mr. J.), which makes everything harder.
It's a lot. I see you.
Thank you, Pam. It helps, being here and having others who know what this is like. No one I know "in real life" has ever seen anything like this - including me. I appreciate you.
As the wife of a lovely human with a TBI, I can't even begin to tell you how much I relate to this story. It's seemingly innocuous. So what? He went to the wrong building. He was late. He doesn't remember to make his lunch. Except, it's all those things, every day, always. And until you live it, you can't possibly understand what it is to be THAT overwhelmed by seemingly innocuous stuff. I see you lady. 💓
Jess, I appreciate you. You are right - "Except, it is all those things, every day, always." Thank you for standing with me. I really appreciate your presence and understanding.
Absolutely. If I’ve learned nothing else, it’s that validation of the existence matters, even if nothing changes.
Oh Anne, I totally agree with Jess in this! There is no way I can tell you I understand what you are going through. But I believe you and I see it is so hard and I am so sorry this is such a long road to walk down. I do know you are not alone in your suffering. Your gratitude for the support is beautiful and so are you. 💕
Wow ! I have no idea really on a day to day level how dealing with this must be. But I can very much empathise. It must be quite overwhelming at times. My partner was diagnosed 4 years ago with inoperable prostate cancer, with a prognosis of 5 years. On my bad days I struggle hugely with this. But like you said, nobody in your ‘real life’ can relate to what’s going on for you; can relate to how you feel or to your fear. I have found a sometimes overwhelming need to be ‘witnessed’, to be seen, heard and understood ……. and it doesn’t happen very much. You need some support. I’m so glad I found your Substack. Hopefully you can find some support here, and through your writing will find some extra strength.
Has anyone told you yet the doctors don't know what they are talking about? and also that you could get hit by a bus tomorrow? I just want people to understand the weight of ambiguous loss and anticipatory grief. I see you, Lee Williams, and I ache for you.
Let us know how we can support you too Lee! A need to be “witnessed”. Amen to that!
Jess, exactly this. That's the problem. Its EVERY day.
EVERY day! I need that on a bumper sticker!
I might cross stitch that on a pillow!
🤣🤣🤣🪡
🤔🤔🤔 you've scratched my marketer brain a bit lol now I want to make this
At the risk of sounding like a pusher… DO IT! DO IT!!!
Wow I don’t even know what to say. It’s so frustrating when people interfere like that, it’s not helpful at all!
I’m sorry you’ve had shitty therapists, not what you need and I imagine living in overwhelm the idea of having to try again is exhausting. It took me a while to find a therapist that was a good fit, I just had a flash back to a very stern therapist who just sat and stared at me whilst I cried 🙈🙈
I’m glad at least this professional was supportive, this is indeed complex 💚
Thank you, Sheila. I’ll keep trying.
Sending big hugs 💚
Brutal Anne. Btw—I’m working on the “stand down I’m a caregiver” or something like that, button. Xo.
"Brutal" is about right. Thank you. Dead balls on, as they say.
Yeah I got nothing. Lots of suck happening here.
You have more than nothing. You are standing beside me and I am so damn grateful.
Do you know you’re the first and only person who actually sent me an email and introduced yourself? I’m just as grateful for you .
Well, I am very good at following the rules. You must have asked for said introduction. I am grateful for you, too. I was in Rehoboth this summer and thought about reaching out, but thought it might be too forward. But I will be in Rehoboth next year as well, as my friend had a beach house there. . . .
There’s no such thing as too forward with me. You know that. Please do next time and yes I did welcome readers to say hi.
Debbie would let you stay with her. As long as you can handle the 800 Live Laugh Love signs adorning her walls, you’ll love it 😍
For 10 years I’ve met strange men on dating apps, I think I can meet you in Rehobeth for coffee.
Anne, I hear you too. It is a strange place to be living in day to day. My husband had brain cancer. The obvious outward sign was his lost mobility which happened in a few weeks. He conversation skills only diminished much later. We would discuss things he needed to do ( like making certain decisions) and he would agree but he could not execute the related task.
You feel so helpless because you both know the ending all the while hoping to wake up from the nightmare or for some miracle to restore his health.
Robin, yes, I feel so helpless. Letting go of imaginary control has been a huge thing for me. Because I don't, in fact, have any control over this. Thank you for seeing me.
Anne, these days really suck and I'm sorry they are part of your norm lately! I do hope things will get a little better. Please let me know if I can assist in finding you care or self care for you. It's so hard and I know you know you need to care for yourself but knowing, doing, and having the fucks, time, and space to do it; is a whole different beast!
Thank you, Taylor. I went to the beach yesterday for some beach glass and the beach music of the ocean. Working on self care.
Oh how lovely! So very proud of you!
Aww hon, sitting alongside you, side hugs, tea and biscuits to chat-cry-chat it all out.
I cannot believe how crappy those therapists are! YAY for OT.
Sending hugs, bearing witness and standing alongside you when you need to do battle, as we ALL do to get heard, seen and supported!
Teyani, next you are going to tell me that my therapist telling me her daughter-in-law died of (insert sotto voce) *alcoholism* is also unprofessional!! LOL. I appreciate your support and your information.
Sorry Anne. I don’t think the intention of my comment came across very well. I’ll do better another time.
Oh, no, Teyani!! I loved your comment. I was just building on it. Please don't feel bad. Your intention was important and valued. I just don't have the energy to report her. Too much other stuff going on.
That therapist was AWFUL!! From start to finish.
I appreciated your support.
I totally understand. 💞 and never meant to add to your pile.
You most certainly did not add to my pile. You have been a cheerleader of mine since the beginning. I love your comments.