Tags
absence, Alzheimer's, dad, death, dementia, father, FLD, frontal lobe dementia, frontotemporal dementia, FTD
I’m scattered. Too many…so much…all the very…does…not…compute. There are just too many thingsandstuffs in my head right now. I’m a little – okay, well, maybe very – useless right now. So if this post is a little muddled, be patient.
Honestly, I’m better than I thought I’d be following my dad’s death. Most moments, I’m totally fine. When you’ve been grieving and losing pieces of someone for over 7 years, you’ve already covered a lot of grieving ground by the time they finally die. Really, the only thing I’ve just lost is his physical body. But having that physical body around meant that there was still the possibility that the next time I saw him, he’d have a moment of clarity and we’d connect. I could still hug and kiss him, let him know how much I loved him, and some part of him might still know and want and return that love. That hope is gone. And now he’s just…absent. I feel a little like I’ve lost a child (disclaimer: I am not a mother, so I know what I feel cannot even begin to compare to what a mother feels losing an actual child, so please don’t get angry at that statement). I’ve already grieved for his healthy adult self. Now I’m grieving for the innocent, defenseless child he had become. It was our duty to take care of him, to advocate for him, the way you would for a child.
I got used to it. I got used to worrying about him and what the future held. I got used to hoping for a smile or a look of recognition. I got used to the pain I’d get at the mention of dementia. I got used to saying, “My dad has dementia.” I got used to that being a huge part of who I am. It’s a part of my identity. And now that’s over. I’m not quite sure who to be now. I mean, I’m still me. I know who I am, but now suddenly something is missing. Absent.
I used to see things that reminded me of him and that felt like it was him saying hello. Like the penny, or a train whistle. I keep expecting to see something like that that makes me feel like he’s still here with me, somehow, but I haven’t since after that first day after he died. He’s just absent.
A part of me believes in reincarnation. A part of me believes in soulmates (not the romantic kind). A part of me believes we had a special connection like that. Which, I suppose, is why I expected to feel like he hadn’t really left me, like he’d visit. But I haven’t felt anything like that. His absence is sharp, stark, brutal, unforgiving. It doesn’t make the heart grow fonder. It turns it cold and shuts it down.
When I say something like how sad I am that he’ll never get to see and be proud of what we’ve done with the haunt we’re building, someone always says something like, “Oh, but he does know.” They say it with such assurance. I wish I had that faith. But I don’t know. We went out to the haunt on Monday and it’s the first time I haven’t heard a train whistle in the distance while I was out there. I dreaded hearing it because I thought it would make me sad, but not hearing it was even worse. It was just absent.
We’re having a memorial celebration for him on Sunday. I’m hoping that will bring some comfort. I’m still having a hard time remembering who he was before the dementia. I’ve made a slide show and have watched it repeatedly, but it doesn’t seem real. They’re just pictures of who he had been a long, long time ago. When I think of him, I don’t think of that. I think of the man in the dementia unit in various stages of decline. More than anything, I want to erase those images and replace them with my “real” dad – the one who was actually my dad, not my child. And even more than anything (yes, I know that’s not a thing), I don’t want to feel this absence.
What I wouldn’t give for presence.
This is deeply sad and beautiful, poignant. It’s left me in tears. And though I can offer no words of solace that would ease your pain, know that you are in my thoughts. For what it’s worth.
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It’s worth quite a bit. Thank you.
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I agree, this is beautifully written. Emotions are so raw right after a loss. It is true with dementia, there is an added layer of complexity to the grief. I struggled through similar emotions after my dad’s death. You obviously have great insight so that will help you through this difficult time. I hope the memorial celebration will offer some comfort to you and your family.
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The upside of having lost so many people is that it gives me a little better perspective – though it’s of course different because it’s my dad and it’s the first person I’ve lost to dementia. Putting my head down and plowing through for now.
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I hope it does bring you comfort. I know Hannah’s memorial brought me a little, but only as I was reflecting on it later that day. During it, I was too busy psyching myself up to get through. But every day, you’ll get a bit more, until you backslide, until you get more again. And it’ll never go away, but it’ll get easier. It’ll get easier.
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Thanks. I know it will get easier. I’ve lost enough people to know it’s an ebb and flow. I’ll have good days and bad days. Today’s just one of the bad ones. I know what you mean about psyching yourself up. Mom and I have been so busy prepping everything that I know we’re still kind of running on adrenaline, and I’m hoping we don’t crash too hard once it’s all over and we’re back to normal life again.
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Yeah, I understand. Make sure your support system is in place, because you will. You definitely will.
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Kindred spirits.
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I’m sorry, it is the longest goodbye isn’t it? Please do have some kind of support system in place, it will help in the days ahead. I don’t know you, but I’m sending you a hug, good vibes and strength…
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Thanks, Deb. I’ve got a great support system, actually, and I’m doing better already. I know I’ll have rough days, but I also know I’ll get through them.
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