I’m shattered - and this new format isn’t helping
I apparently have the dubious honor of having been on this forum for 7 years.. I pretty much stay away since it changed however. Intuitive it’s not and I don’t need any more complications in my life. Ok, rant off.
After 20 years of caregiving, the last 5 in a facility, his tbi has crossed the rubicon. Tbi/CTE are completely different from alz - until they’re not. I’m so exhausted I’m broken. After 20 years with this anvil hanging my head are we really nearing the end, or just another plateau.
i would simply like to know what I can not know. 20 years is too damn long
Comments
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I have a grandchild with TBI. It is a rough road. How can we help?
Judith
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Thank you Judith. I’m not sure anyone can. I was mostly just screaming into the darkness. I honestly don’t know that there is anything to do at this point. I was reading something completely unrelated to dementia that used the term “functional freeze”. It somehow sounds so right. I have to pay the bills, and fix the car. I even go off grid, but somehow I’m still frozen in this weird void. It’s just particularly hard now because after several years of very slow decline he’s done a sudden drop, as happens. It just opened it all up again. I come here because I know we all get it and we all hold each other up. Sadly, we all get it. Thanks for letting me say what I can’t say to anyone else. ❤️
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NorthWoods, Your pain is palpable as you share your current experience. I have no personal experience with tbi so I can only offer an open ear and open heart. I don't care for the new format either. That said, please feel free to post, even to rant, anytime. I find that others truely listen and care. And that helps a little. I pray for strength and a little peace for you.
Tom
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Glad you found the wherewithal to post. Please do more when you can. It all sucks, no matter the origin.
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Hi NorthWoods,
I am so sorry that you have been dealing with this for so long. It is unimaginable. You are amazing to have endured for so long. I pray that you soon have an end to this suffering.
Maybe you could go to a counselor and talk about your pain and anger. It has helped me. Of course, this forum has been the best help because I feel I have real friends who understand and support. I have finally resorted to an antidepressant because my health has been affected by the stress. I am hoping it helps me.
With all of your years of endurance, I can only imagine the experience you have with coping. You may not see that now because you are tired and beat down. In the future, I hope that you will feel well enough to share what you have learned along the way.
In the meantime, please stay in touch and know that you are not alone.
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Sending a virtual hug. I don't know what I would do without this forum to vent. Just people listening and understanding helps. You feel so alone because nobody understands except those here who are going through it. It's terrifying and heartbreaking.
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ive been trying to figure out how to express my gratitude but everything sounds so trite. Maybe because it can’t be explained. I’m hanging on to a frayed rope but I feel some stronger today. I need to find my little buddy and blow some bubbles He’s 2.5 and puts life in perspective
thank you for reminding me denise, I have learned a lot. most importantly, even when you can’t possibly have time, take it anyway and take care of yourself
Again, thank you all so much for being here for me.
p.s. I just got a notice that I’ve been “promoted to new member”. If only
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Our grandson, who is 2.5, is our little lifesaver. DH is so much calmer when his little buddy is around. It’s really amazing.
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(((NorthWoods)))
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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