Haven't written in weeks but feel the need to share with you. I received the final puzzle piece so much earlier than I was told. It was suggested that brain donation autopsy results take up to 6 mos but I just received them at 3 1/2 mos.
I can't tell you how shocked and rather disappointed I am! My precious husband did not have CBD, but rather Lewy body dementia with late stage Alzheimer's! I spoke with the pathologist as well as the dr we have dealt with at the Hospital of the University of Pennsylvania. I asked how 3 neurologists specializing in these diseases could have been wrong. He said they weren't really wrong, that Michael did not have signs and symptoms of those diseases but moreso CBD. Even the gross pathology report was CBD but not the microscopic. Now I understand why they can't really definitively diagnose without autopsy.
I guess I am disappointed because these diagnoses are more common and I could more easily accept a very rare diagnosis. My first question was one of his course of treatment. I was assured that had they known the diagnosis, he would have gotten no other therapy other than possibly trying some Parkinson's drugs which probably would not be effective since he had no classical symptoms. Also I was told the outcome would not have been different. I am so thankful for that. I know what I would have done with the guilt had it not been so. Still in shock.
It's 14 weeks today since Michael passed and the emptiness seems to get worse. I went to a bereavement breakfast for the 1st time today and felt very uncomfortable. I was so much younger than anyone else and felt out of place yet the young widow/widower group is too young for me. The organizer suggested I try a new mtg next week. I will give it a chance. I know my isolating is not good for me so I will make myself go.
You all tell me it gets better so I'm plugging on but all I really want to do is sleep. Now that the puzzle is complete, I have nothing to anticipate, like no purpose. I guess I feel like he doesn't need me anymore even though I know he hasn't for 14 wks.
Does this mean I can't talk to you anymore? I no longer qualify with PSP or CBD. Feel so lost and alone.
Thanks to you all for all your support.
Big Hugs,
Liz
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Mikey12345
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Hi, sorry about the autopsy not being what you expected, but I think it was great that you did it. My son died of PSP(?) but it all happened so quickly there was NO autopsy done.
Though I am slowly removing myself from this site, I'm still here, yet my son died May 4, 2017.....16 months ago. I think you should stay until YOU are ready to move on.
I think this site has helped me considerably in my healing. I forget. Reading the sharing brings it back. It helps.
I'm in your spot as well. I feel that the grief is getting worse as well. I too am younger like you but in the inbetween group. I get up every day and do one thing but it doesn't help much. Nobody understands unless they go through it and the classes don't start here for another few weeks. I think they are wrong to wait since I truly needed it most at the beginning.
As for the diagnosis, funny, I was just looking through Charles' old medical records and I saw notes I'd overlooked before. He was properly diagnosed but it took a long time. Alas, nothing can be done anyway.
Thinking about you and sending warm wishes. It's so hard.
Cuttercat, I must have deleted the response I wrote to you. Darn. Want to thank you. Only those who have gone through this can truly understand.
There is a series beginning in a week for those who have lost a spouse and I'm going to attend. I'm hoping it's a little different than the hospice group that I've attended. We'll see.
Dear Liz,You are one of us! No matter the way the dx turned out, you lived life as if hubby had CBD...and participated here as such. Who knows how many of us are believing our loved ones have CBD or PSP - but maybe in the end it will be FTD, or AD or LBD? ...there is so much cross over amongst all those tauopathies!
Please don't feel that anything has changed - you are part of this community.
On another note, I fully understand your feeling of "purposelessness"...and although bereavement experts may understand the grief of loss, there is a special subset of us bereaved who were intense care-givers, and the counsellors may not really understand our experience. In some ways, we lost our partners as we'd known them, years ago. They became our patients and our relationship did change or at least gain this other complexity for that time. The experience of caregiving was so intense that their death was dizzying in the disorientation we feel. Caregiving was full of worry, frustration, confinement and boredom. Yet it was a "life" and had huge purpose! What greater purpose than to keep a beloved alive, as well and as happy as is possible?
So no wonder we feel without purpose: we feel "what's the point of anything, now?" The pain of longing is huge. Life seems so unbelievably empty. I am doing what I think I "should" - taking every invite I can, Giving myself assignments to do stuff and making myself do those tasks. Putting one foot in front of the other. The one thing I try to hold on to, is that countless others have come through this, so it MUST at some point change, and although I will never stop missing him, I know that my emotional life will have to come back closer to normal. It has for countless others for centuries, so why wouldn't it be the same for me. I can't feel it right now, but I have to believe, cognitively, that it will.
Well, you certainly said it like it is, as always, Anne. Thank you so much for taking the time to respond. I feel your pain as you are where I am, like several others. I so want to feel normal, whatever that is. I just want the pain to stop. But on the other hand, if I felt better I would feel guilty for not mourning. I'm sure you get it.
I agree that so many have gone through the loss of a spouse and are doing well today and we will also in time. There is no short cut, I'm afraid. We have to do what we are doing one day at a time and believe that this, too, shall pass. Thank you for your support.
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