Tags
death, dementia, dementia care facility, father, FLD, frontal lobe dementia, frontotemporal dementia, FTD
Since my dad died 5 months ago, I’ve had dreams and nightmares about him almost nightly. In the dreams, he’s always in the early to middle stages of the dementia and either he’s wreaking havoc or I’m trying unsuccessfully to protect him from something. As a result, I have not really wanted to go to bed. When I do, I tend to lie there and start remembering him, which upsets me, because I’m never remembering good stuff. It’s never the stuff from before the disease took hold. I have crisp, clear memories of just about everything following putting him into the dementia care facility, but memories before that are hazy.
Except “hazy” isn’t the right word. I was trying to explain this to S a couple nights ago. Since as far back as I can remember (which isn’t as far back as you’d think, which I’ll explain in a minute), my memories have been dark, like when you’ve been outside on a really sunny day and then go inside, and you have those couple seconds before your eyes have adjusted and everything is just too dark to make out clearly. I have little snapshots of images or events, like old Polaroids that are dark around the edges (and like my peripheral vision is gone), but they seem like just that – photographs, not actual memories. When I was in 6th grade, I fell off a horse and got a really bad concussion that caused me to lose my memory. I still knew who I was and that kind of thing, but my short term memory was affected for awhile (which made school interesting) and I forgot much of my early childhood memories. I have no memory of the event itself that caused the concussion. We jokingly referred to my life before the fall as BC (before concussion). Eventually, over time, I recovered some memories. I’d be in class in college and suddenly remember that I had a trundle bed and call my parents all excited that I remembered something. I think I’ve also made up memories based on old home movies and photographs, which may account for the dark, photographic quality of so many of my “memories.”
The problem is that my memories of my dad before the dementia are like that, too, now. I can remember little snippets of who he was or what I loved about him, but they’re too dark to grab hold of and examine or take pleasure in. They’re a concept of who he was, not who he really was. And when I miss him, I’m less missing him as he was pre-dementia than I am missing the child he became to me. When I miss his hugs, it’s not the lean, fit dad I had had, it’s the huge-bellied, slightly stale smelling man-child wrapping me up in his arms. I guess it was just too long a time that we had to know him as not-him, and those are the memories and images that are seared into my brain. Maybe I was so busy committing them to memory in anticipation of losing him completely someday that it made me forget him.
And so, when I lie in bed, I have to fight those harder images – especially the ones from his last few days. I try to do everything I can to wear myself out enough that I can just go to sleep, staying up later than I should so that I can collapse into bed and not have too much time to think. I did that a couple nights ago, with the result being that I felt both nauseated and exhausted, which was how I felt over the couple days that Mom and I spent in his room waiting for him to die. And suddenly, I was in a flashback. I was back in that room, with the horrible sound of him moaning and the oxygen tank pumping away, with his arms and legs seizing and turning purple, and I felt so helpless again. So fucking helpless.
I’m brought down by the thought of how much he suffered and of how he wouldn’t leave us – how he moaned a little louder every time I told him it was time for him to let go, and how he waited until Mom and I finally both left the room at the same time to die. That agony he displayed haunts me.
I’ve been trying to do that thing where, when you have a really bad memory, you try to focus on something happier, but those happy memories of him from before the dementia…they’re just so damn dark. I can’t focus on them because they’re not solidly there. I can think of other vaguely happier or funnier memories of him when he was more alert and I could still make him laugh, but those memories are still sad ones, so they don’t help much.
So that’s what I’m doing right now. Sitting here waiting until I’m so tired I have to go to bed, but worrying that if I get too tired, I’ll put myself into another flashback. Breathe in, breathe out, breathe in, breathe out.
I’m sorry you are experiencing the darkest memories the most. I do think that some of us family caregivers experience a form of PTSD after a particularly harrowing death of a loved one. For the entire first year of my mom’s death, horrible memories of her last days and depressing memories of her last year would pop up in my mind at all times of the day and night. Because I was actively writing about the experiences, I didn’t necessarily want to shut those out and think only happy thoughts, but it was emotionally exhausting.
The strangest thing happened once I marked the one-year anniversary of her death. It was like a veil was lifted and I haven’t felt those oppressive memories weigh on me as much. Of course everyone is different and I hope you don’t have to wait an entire year for some kind of relief. But when people say “eventually you’ll remember the good memories too” after someone dies, there may be some truth to it. Best wishes to you as you work through the grieving process.
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Thanks, Joy. I’m hoping I just need more time to process it all. And I do think this is a form of PTSD. The other time I seem most likely to get overwhelmed by the bad memories is in the shower at night. I think I spend so much of my day pushing everything down that when I finally relax in the shower, the memories all flood back in. That’s good to hear that it has gotten easier for you. That makes me feel less hopeless.
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I’ve been reading a book about Trauma – “The Body Keeps the Score” – and it’s fascinating (read: horrifying) the ways the brain, mind, and body are affected by trauma. The author goes into great detail about all the ways we are affected by traumatic stress…right down to the little neurons. His basic recommendation for treatment is to “integrate” the trauma into a bad memory, rather than reliving it. The Trauma Center, where the author works, is a fabulous resource and where I stumbled upon the following, hope-giving, quote:
“The Chinese character for crisis is a combination of two words – danger and opportunity. People who fully engage in recovery from trauma discover unexpected benefits. As they gradually heal their wounds, survivors find that they are also developing inner strength, compassion for others, increasing self-awareness, and often the most surprising – a greater ability to experience joy and serenity than ever before.” – http://www.traumacenter.org/resources/pdf_files/Common_responses.pdf
Love,
your cousin Becca 🙂
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Thanks, I will definitely check out the link. I know for sure that my mind and body have retained trauma over the years, but I’ve worked hard to learn from it and move on. Life, though, gives you new challenges every time you think you’ve conquered the last one, doesn’t it?
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