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The Perks of Being an Artist

Tag Archives: early stages of dementia

Is This What It’s Like?

17 Tuesday Jul 2018

Posted by emilypageart in dementia, health, mental health, Uncategorized

≈ 6 Comments

Tags

Alzheimer's, brain fog, caregiver, dementia, early stages of dementia, forgetfulness, frontal lobe dementia, frontotemporal dementia, migraine

For the last few days, I’ve been stupid. Alarmingly so. I get menstrual migraines, and a big part of them, for me, is that I can’t think straight. I get forgetful, I can’t concentrate, and logic doesn’t exist. My brain pod hurts, sure, and I get some nausea and visual disturbance, but I can keep mostly functional with meds. Except for the stupid. The meds don’t touch that. And the stupid makes life incredibly difficult – particularly this cycle. It reminds me of when I got a concussion at age 11 and lost my memory. I’ll have a conversation, and 20 seconds later, forget what it was about. I’ll know we talked about something, but I can’t tell you what. It took me 15 minutes to pack my lunch bag this morning because I kept opening the fridge to get something and forgetting what I was looking for, or setting some ziploc baggies down and forgetting where I put them.

And then I panicked. Is this what the early stages of dementia feel like? Stepping back and examining what I must look like – shuffling back and forth to the fridge but not taking anything from it, hunting for the ziploc bags that are right in front of me – I realized that this is exactly what I’ve seen dementia patients do. It’s terrifying. Is this how my dad felt in the beginning? Did he realize it? Did it scare him? Is this what I’ll be like when I first get dementia? Will I recognize it? Is it already happening? How would I know if this was migraine effects or dementia, given that the kind of dementia my dad had can hit even when you’re still young? I mean, this is clearly migraine related, but my level of brain fog during my migraines seems to be getting worse. Is it a sign?

I doubt anyone who’s been a caregiver to someone with dementia – especially to a parent – hasn’t at least briefly worried that they’ll develop it, too. I’d bet every one of us has listed the reasons why it’s more or less likely that we’ll suffer the same fate. I mean, my dad had dementia. I’ve had 5 concussions. I get migraines. I’ve been on various meds that could have altered something in me, upping the odds that I’ll get it in some form. I feel like it’s inevitable. It’s just a matter of when it’ll hit. And who would take care of me? I don’t have kids or nieces and nephews.

Normally, this would be the point in my post where I’d give you some kind of silver lining or put it all in perspective to make us all feel a little better. But I’m not up to it right now. Right now I’m just scared and in pain and I needed to say this all “outloud.”

Let’s make a pact, okay? I’ll keep voicing these fears, and you’ll be honest with me. If you ever feel like you’re seeing signs in me, please speak up. And I’ll do the same for you. And we’ll do our best to take care of each other.

Dat Dere_compressed

Dat Dere – explanation here

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Remembering the Early Stages of Dementia

17 Thursday Dec 2015

Posted by emilypageart in death, dementia, family, gratitude, mental health, Uncategorized

≈ 6 Comments

Tags

Alzheimer's, Carol Manning MD, death, dementia, diagnosis, early stages of dementia, father, FLD, frontal lobe dementia, frontotemporal dementia, FTD, memory, Memory Disorders Clinic, Memory Disorders Clinic at UVA, Woodrow Wilson Rehabilitation Center

You know, it’s funny how grieving can sneak up on you. Most of the time, I’m pretty okay with where we are in my dad’s dementia journey. I’d call it a “struggle,” but really, we’re past the point where there’s anything to fight, so “journey” seems more appropriate. While I think about my dad every day, and certainly have moments where the enormity of where we are hits me, I manage to keep the tears and panic at bay a good portion of the time. But there are those times where the grief sneak attacks you. A couple days ago, I was talking to my mom, and she said that a man she knows from the gym asked to talk to her about the Memory Disorders Clinic at UVa because he knew we had taken my dad there for several years. They have an absolutely brilliant and caring doctor there named Carol Manning, MD who we can’t say enough good things about, so Mom was happy to share our experiences about the facility. When Mom sat down to talk to him, she learned that he, like my dad, has frontotemporal dementia. As soon as she told me, I said, “Fuuuuuuuuck!” I don’t even know this man, and I started tearing up. I was devastated for him.

He’s only in his 60’s. Just like my dad. He has a daughter named Emily who is just about the age I was when my dad was diagnosed. Just like my dad. He has stopped driving after failing a test at the Woodrow Wilson Rehabilitation Center that helps evaluate the driving capabilities of people with medical or cognitive issues. Just like my dad. He had been struggling at work and had to retire. Just like my dad. He was scared. Just like my dad. 

When she told me about all of this, I was immediately brought back to the early stages of my dad’s disease. I remember how scared we all were. I remember that it was around this time of year that he went for testing at the Memory Disorders Clinic, and we had to wait several weeks for the results to come back. But we knew that it would tell us he had some kind of dementia, we just didn’t know what kind. I flew up from FL to be there at the appointment so I could hear the diagnosis and ask questions. It had snowed the night before, so it was a worrisome drive to town to get to the clinic, and I remember how tight my stomach felt the whole ride, both from fear of being on the roads and fear of what would happen at the appointment. I remember sitting in the office and hearing the words “frontotemporal dementia” for the first time. I remember being shocked to learn that Dad couldn’t tell time on a clock, and that he couldn’t explain the meaning behind a phrase like “There’s no use crying over spilled milk.” I remember the doctor telling us that there were no cures or treatments that could delay the disease’s progression. Drugs that work to slow Alzheimer’s have no effect on frontotemporal dementia, so all we could do was put him on meds to try to relieve the anxiety the disease was causing. I remember walking to the car in the parking lot and watching my dad’s shoulders start to shake. I remember my mom and dad and I wrapped in a group hug by the side of the car, rocking and weeping. I remember standing there in the cold Virginia air with wet snow seeping into my sneakers and heart and feeling utterly helpless. And in that moment, I knew that I was ceasing to play the role of daughter to him and beginning the role of caretaker. When I got back to FL, I remember going online and looking up the disease and reading the prognosis of a life span of 2 to 10 years following diagnosis. I remember telling my dad not to do anything stupid or noble (depending on your point of view) like committing suicide to spare us.  I remember the terror of what the future would hold.

When I look back at that time, it felt like the world was ending. The tears start flowing remembering how much emotional pain my dad was in. I grieve for how he felt and how I couldn’t make it better for him, how I couldn’t protect him. I grieve knowing that he has become exactly what he was most afraid of being.

So when I learned about this man that Mom talked to who is somewhat newly diagnosed, it throws me back into that time frame, and I grieve for him and his family. I know at least some of what lies in store for them, and I wish I could protect them, too. As Dad’s disease has progressed, and I have had to adjust to the new normal repeatedly, I start to forget where we’ve already been. Each new stage feels devastating. Now that he’s nearing the end, it feels like this is the worst place to be. But remembering how it used to be, that feels equally like the worst place to be. In some ways, I’m grateful that we’re no longer there. Part of me is grateful that we don’t have to go through this too much longer. Don’t get me wrong, I’d give anything to go back to the time early in the disease where he could still laugh at my jokes, or dance around the dining room table with me, or share his love of music, or just give me a proud-papa look. But that time was also so incredibly hard, because he was scared and angry and frustrated and cognizant of the fact that he was losing himself. He had so little control over his emotions and his actions, and he accidentally hurt us, too, sometimes. So while I’d love to have so many of those things back, he’s in such a better place now that he’s beyond knowing what he’s lost.

I’ll leave you with this thought: I was talking to a friend last night about grief. Today is the anniversary of her sister’s death, and she’s grieving hard. She said that she’s been seeing a grief counselor who gave her this thought: Imagine your love is a cupful of water. If you love someone fully, that cup is full. When you lose that someone, the water pours out. The more water had been in the cup, the emptier you perceive the cup to be. We should be grateful that we had such a full cup, even if it means that our grief is that much stronger as a result.

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Emily Page

Emily Page

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