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Polaroid Memories

05 Tuesday Jul 2016

Posted by emilypageart in death, dementia, family, Fractured Memories, mental health, Uncategorized

≈ 4 Comments

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.

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Baby Shit Brown

29 Friday Jan 2016

Posted by emilypageart in culture, dementia, humor, Uncategorized

≈ 7 Comments

Tags

baby shit brown, dementia, dementia care facility, wall colors

Not too long ago, the dementia care facility where my dad was living repainted its walls. It needed it badly, but the color scheme they’ve replaced it with is, well, questionable. One resident was shuffling past the brown and green doors and said, “Ew. It looks like baby shit.” Needless to say, I love that resident.

OLOP's new color scheme.JPG

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To All the People Out There Tonight Who Are Comforting Themselves

23 Saturday Jan 2016

Posted by emilypageart in dementia, family, kindness, Uncategorized

≈ 10 Comments

Tags

Alzheimer's, caregiver, Christopher Center, dementia, dementia care facility, FLD, frontotemporal dementia, FTD, Our Lady of Peace, skilled nursing

Tuesday, the big move happened. My mom and a friend moved my dad’s belongings over to the skilled nursing center on Monday, and were supposed to be moving him over, too, but there was some kind of staffing glitch. So Mom moved Dad over on Tuesday, instead. I didn’t hear much from Mom about it, so I assumed everything was okay. Checked in a few times, and she was doing alright. The next day, she texted a picture of him lined up in the hallway, just like we’d feared they would and just like they’d promised they wouldn’t. But some of the staff from the dementia care facility did make an effort to get over to see him on their breaks. So there’s that.

I texted with her last night because she’s caught up in the blizzard hitting the east coast and I wanted to make sure she was okay. She was not. As she put it, it was killing her to not be there with him. We had lost power and I was trying to preserve my cell phone battery charge, so I couldn’t call her, but I spoke to her today (our power is back on, thank goodness). She said he seems really sad. He wouldn’t engage with her at all. No response to the normal cues that make him chuckle or give even a one word answer. Even the activities director who knows him from the dementia care unit said he seemed sad, so we know it wasn’t just Mom projecting her emotions onto him. Exactly what we were afraid of happening. I hate the thought of his final days/months being sad ones. I hope he’s not scared. He doesn’t deserve this. I feel like we’re failing him even though we checked out every option and I know we chose the best one.

Really, it’s not us who are failing him, but the powers that be at the facility who insisted we move him. The system is failing us. There are no words for how furious I am at them for doing this to him and to us. I hate how far away I am because I can’t be there to hug my mom and give her comfort. Being stuck at home in a blizzard just leads to too much time to think and worry. This blizzard is exceptionally bad timing, because Mom being able to visit Dad would bring both of them a little solace right now. And I can hear the pain in my mom’s voice. She’s been so incredibly strong through all of this, but I can feel her heart breaking. I want to wrap her up in love and protect her from it, but I can’t. We have to face it. And we will. But it sure ain’t fun.

Anyway, if any of you out there are the sending good vibes or prayers kind, my family could use it right now. Just put a little love out into the universe for my parents, please.

As a thank you, I give you this:

 

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Resolution to the Long Term Care Issue

12 Tuesday Jan 2016

Posted by emilypageart in culture, death, dementia, Uncategorized

≈ 3 Comments

Tags

dad, death, dementia, dementia care facility, father, FLD, frontal lobe dementia, frontotemporal dementia, FTD, nursing homes

As you know, we had somewhat of a crisis at the end of last week when my dad’s dementia care facility said they were no longer equipped to care for him. Feeling useless down in Raleigh, I drove up to see him and my mom on Sunday, and we spent Monday figuring out where to put him. Distressingly, there were very few options for someone at his level of disease. This is worrisome in light of all the baby boomers who will be needing services like this over the next 20 years. The system will be completely overwhelmed. But that’s beside the point.

Because we had almost no options, we decided we’d take another look at the skilled nursing unit at his facility where they wanted to put him. Most of their rooms are semi-private, but, as luck (for us, at least) would have it, a 108 year old resident passed away Monday morning, making a private room available. Now, my dad doesn’t need a private room at this point – having a roommate most likely wouldn’t bother him one bit – but for our sake, we wanted one. I can’t imagine, if he gets sick and is actively dying and we’re trying to have alone time with him, what it would be like to have another resident and their family coming in and out of the room. Not the ideal situation, though plenty of people do it.

We took the official tour with the admissions administrator/social worker who, it seemed to me, somewhat disingenuously cooed at and kissed the residents who were in the hall as we walked passed. She was really putting on a show. We’re still not crazy about the place, but it seems to be our best option, and we’ll be watching like hawks, so we opted to take the available room. When we went to visit my dad in his current unit, the head nurse, who we really like, came over looking worried and a little expectant. She had apparently clocked out but was waiting for us to come down because she’d heard we were touring the nursing side. When we told her we were going to take the room, she exhaled and started crying. She was so relieve and it was obvious how much she had been dreading the thought of not seeing him daily. She really does love him, and it made me feel that much better about the decision. There are several staff members who work in both units, so there will be people that already know how to care for him without us having to train them, and in his more lucid moments, that may bring him comfort to see familiar faces. And I know the head nurse will be keeping an eye out for him, too.

While I’m still not thrilled that he has to move, I know we’ve chosen the best option for him. Thank you to everyone both here on WordPress and on Facebook, who have reached out with support after my post last week. You have no idea how much that helped. That’s the lowest I’ve been in a long time regarding my dad, and your love made it bearable. Thank you everyone. Thank you.

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I’m So Royally Pissed Off At Dementia

08 Friday Jan 2016

Posted by emilypageart in death, dementia, family, Uncategorized

≈ 15 Comments

Tags

anger over being a caretaker, caregiver, caretaker, death, dementia, dementia care, dementia care facility, dementia ward, father, FLD, frontal lobe dementia, frontotemporal dementia, FTD, memory care

Last night was the 2nd time since my dad was diagnosed with dementia that I truly got mad at him. It’s not even remotely his fault, but I am angry. So goddamn angry.

The first time, I was home alone with him one night during the year that S and I lived with my parents to help care for him. My mom and S were out of town so I was home alone with him. It was time for bed so I sent Dad upstairs thinking he could get himself to bed. Not long after he’d gone up, he came downstairs and knocked on my door and, in a very cranky voice, said he couldn’t sleep because there was a light on making the bedroom too bright. I figured it was a light from the back porch, so I went up to double check and saw that it was still on. Turned it off and sent him back upstairs again. A few minutes later he came down again and irately told me that I hadn’t solved the problem. I had to get up early the next day, and I was exhausted from having watched him on my own the last couple days, so I told him that the light was already off and he needed to just go to bed. And then he told me to fuck myself. My father, who had been my best friend, who had never cursed at me my entire life, told me to fuck myself. That’s when I just lost it. I screamed at him. Just. Plain. Screamed. I was so angry at how he’d upended my entire life and now he was telling me to fuck myself? I’d moved in to care for him, leaving behind my house and friends in FL. I had no life in VA now that I lived with him because he constantly needed watching. I stormed upstairs, pretty much dragging him behind me to prove that the fucking light was fucking off fucking fuck fuck fuck. When we got to his bedroom, there was indeed a light still on blazing through the window. At some point that day, he had turned a light on from a different porch and his room was ridiculously bright and there was no way he could have slept like that. I felt horrible. It was not his fault. The cursing wasn’t even his fault. It was the disease. I haven’t been mad at him since.

Last night, I got mad again. Really mad. Raging mad. And once again, it’s not his fault. The facility where he lives has decided that he absolutely must be moved to the skilled nursing facility that we hate. We had enrolled him in hospice because someone suggested that if they had the extra help from them, he could stay put. So we did that. But apparently, that’s not enough. They’re “not licensed for full care.” Of course, no one mentioned that was an issue when we moved him in. No one said he wouldn’t be able to age and die in place. They kind of ambushed my mom at the care planning meeting today with that lovely little tidbit. She called me afterward, sobbing. So now we either have to move him to this dark, depressing, awful facility linked to where he is now, or go searching again for a different facility where visiting him won’t be so terrible. And spend the money and the time to have him moved. And his long term care insurance has run out, so it will all be out-of-pocket. And the thought of him being more disoriented and possibly scared and unable to tell us he’s scared breaks my fucking heart. And I’m tired of my fucking heart being fucking broken. I’m tired of being a caretaker. I’m tired of fighting to get him the care he deserves. I’m tired of having him not recognize me or what I’m going through. I’m tired of trying to choose the least awful option for him. I’m tired of walking the line between getting him great care and extending his life unnecessarily. I’m tired of caring. I’m tired of feeling like I’ve got an open wound that no one can see, and still having to put on a happy face at work and pretending like I’m not so utterly exhausted by grieving for the last 6 years that I can barely think straight. I’m tired of watching him suck the joy out of my mom’s life. I’m tired of having to watch her battle everyone around him just to keep him safe and whatever version of happy he can be. I feel so horribly, horribly guilty for feeling like I just want this over. No more. We’ve been through enough. I know it’s selfish, but right now, I don’t even care. I know I’ll regret feeling this way once he’s really gone. I know I’ll wish I had him back regardless of his condition. But I don’t care right now. I just want this to go away so I can move on. I’m tired of one crisis after another.

I sat on the bathroom floor sobbing last night and wishing my dad would choke on some food and die. Or wishing a nurse would accidentally give him too many meds and his body would finally call it quits. I’m so fucking mad at him for putting us through this. I mean, I’m mad at the disease, but it’s manifesting through him, and therefore he’s the target of my wrath right now. I feel so guilty writing this, but I need to get it out of me. And I’m betting there are plenty of other caretakers who’ve felt this way. So I’m just going to say it.

I’m angry at him for getting this disease. I’m mad at him for putting us through this, even while I know he would never in a million years have wanted this to happen to any of us. I’m just so fucking mad. So mad. So. Mad.

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How To Choose a Dementia Care Facility

06 Wednesday Jan 2016

Posted by emilypageart in dementia, Uncategorized

≈ 4 Comments

Tags

Alzheimer's, dementia, dementia care facility, father, FLD, frontal lobe dementia, frontotemporal dementia, FTD

 

When someone you love is diagnosed with dementia, your world gets turned upside down. Navigating your new life as a caregiver can be tricky, and one of the hardest decisions is whether or not to put your loved one in a dementia care facility.

First, when they’re diagnosed, let them know you’re going to see them through this. That you will stick around no matter how rough it gets. That you love them and will laugh with them and cry with them as needed. That you will do your utmost to get them the best care possible.

Do not make promises that you will never put them in a dementia care facility. If you have to renege on that promise later, there will be no end to your guilt. You may very well be in a situation where keeping your loved one at home is best for both them and for you (remember, your life counts, too). But there are also instances where keeping them safe at home just isn’t a possibility. When my husband and I moved in with my parents to help my mom take care of my dad, we were barely able to keep up. Even with three of us on shifts watching him, he was too able to get into trouble. He was young, fit, and mobile – basically the world’s most capable and destructive 4 year old – and we were afraid he was going to hurt himself or us accidentally, so we decided we needed to find a place for him to live where he would be safe.

I do not recommend visiting facilities with your loved one. It will only scare them because, let’s be honest, even the nicest places aren’t somewhere any of us want to end up. You can explore those possibilities on your own or with a friend or family member. Having someone along with you when the time comes to visit facilities helps you talk things over and crystallize your feelings about each one. And don’t wait until the last minute to start looking. There are often long wait lists to get into dementia care facilities – particularly for men. It’s better to get on a list early and turn it down if you’re not ready to place them there than to be scrambling.

Consider visiting places you liked a second time – this time, unannounced. How things are working when they’re expecting you may not be the same as when they aren’t anticipating showing things in their best light. Aim for a meal time as that seems to be a good indicator of how residents are treated. Are they sitting there not eating or being fed? Are they wandering around not eating? If they are, are the staff yelling at them to sit down, or are they using creative ways to redirect them? Does the food look edible? Is there a nutritionist on staff? My dad gained a TON of weight when he first moved in, in part because his meds made him thirsty and they’d give him juice instead of water. Because his disease affected his appestat (the part of the brain that tells you you’re full), he would eat and eat and eat, so they’d feed and feed and feed. If you put the food in front of him, he’d gobble it up. They didn’t seem to realize that just because he snarfed it down didn’t mean he was really hungry for more.

Watch how the staff interact with residents closely. Some people were made to do the job of working with the demented, others, not so much. Are there staff members sitting around reading the paper and ignoring the residents? Do the staff help each other problem solve? If a CNA is struggling to get a resident out of a chair, does someone come to his or her aid? If a staff member is unable to get a resident to do something, do they keep repeating the same thing louder and louder or say things like, “Don’t you remember – we talked about this yesterday?” There are, sadly, some people who just really don’t get it. They don’t understand the concept of redirecting or soothing. They are frustrated when the residents don’t remember that you told them the same thing 6 times already. The staff that are really great are the ones who can laugh it off that it’s the 80th time they’ve had to say something, or who try to figure out what’s agitating a resident and soothe them. The ones who can make the crankypants residents laugh with a hug are geniuses.

Depending on the way your loved one’s dementia has progressed, they may do better with smaller spaces or they may need the room to roam. Some people with dementia need to pace, so finding a space with both room to move inside and a safe place to wander outside is key. My dad’s place has a large, open common room with lounge chairs, regular chairs and tables with puzzles and activities, a dining room, and a couple TV’s, as well as a music room and a sun room. Outside, there is a fenced in yard with sidewalks. The busier residents can do laps both inside and out, which helps with their agitation. Other dementia patients may need smaller, more confined spaces to feel safe. If you’ve been living with them at all, you’ll know which seems better suited for your loved one. Having a couple different rooms for activities helps break up the day, especially for more agitated residents.

Other small details that will aid in your loved one’s comfort: large name plates or “memory boxes” by their doors are helpful in getting them to identify a room as their own. We’ve put photos and items that mean something to my dad in the memory box. It both helps him find his room, and lets other people know a little bit about him, reminding them that he was a fully functioning person once upon a time. If the facility doesn’t have that option, consider making a sign for the door to help your loved one identify their room. Another detail is multiple bathrooms near the common area. Ideally, there will be more than just a bathroom in the private or semiprivate room in case of bathroom emergencies.

Make sure the majority of residents aren’t wandering around in their pajamas. If they are, inquire about how often they’re getting bathed and changed. When we first moved my dad in, we had an issue because he wanted to shower daily and they only bathed the residents twice a week. We were able to work out a system of getting him up early to bathe each day so he was happy, but it took some convincing the staff. When they figured out how agitated he got when he couldn’t start the day with a shower, they became much more receptive to the idea.

Ask about what activities are provided. Is there a calendar of activities that gets sent to families so that you’ll know when good times to visit might be (either to avoid the activity or fill in with some entertainment between activities, or even to come participate in them with your loved one)? Is there any kind of regular music program? There have been several documentaries that have come out showing just how helpful music can be in making someone with dementia happy and more communicative. With my dad, he can barely speak anymore, but he can still sing some song lyrics with us, and I feel like he’s more alert if he’s been listening to music.

Does the facility restrain residents? I have mixed feelings about this one. Ideally, no, you don’t want residents restrained to a bed or a chair. Restraints don’t make for happy people, no matter their condition. But there are times that I wish it were an option. My dad has fallen out of bed several times and bruised himself up nicely. Bedrails are considered to be a form of restraint, and because his facility is a restraint-free facility, it means we can’t do anything other than put down some mats on the floor next to his bed in case he does fall. Similarly, other residents have taken falls because they get out of their beds or wheelchairs, not realizing they aren’t able to walk anymore. It’s one of those questions that doesn’t have a good answer. Do we keep them free and “independent” and risk them hurting themselves, or do we confine them and risk them being unhappy? You lose either way.

What are the long term care options? This is a big one. If the resident becomes harder to physically manage, will they have to be moved to another facility like a skilled nursing center? What happens if the resident becomes violent? What happens if they get injured? Will someone accompany them to the hospital should an emergency arise (appallingly, the answer is usually “no”)?

And lastly, is the facility you’re considering somewhere you will be okay visiting your loved one? If not, then it’s not the right place for them. If you hate being there, don’t put them there. Even if you’re sure you’ve picked a good place, you need to visit often and randomly. Your loved one can no longer advocate for him or herself, so you need to constantly monitor them and make sure they’re being cared for. Your job as caretaker does not end once they’re in a dementia care facility.

Make sure they’ve got clothes that fit as their weight fluctuates. (We’ve got several sizes of pants and shirts as my dad has ballooned up and now is shrinking down. For awhile he was having bathroom issues and would end up peeing or pooping into his shoes – that’s a whole other post – and often his feet were swelling and he couldn’t get in and out of the shoes he had. Our solution ended up being crocs – he can get his feet in and out without too much difficulty, there’s a strap on the back to hold them on, and you can hose them down if there’s a bathroom accident. I don’t recommend flip flops because they make the residents more prone to falling.) Make sure they’re being changed regularly if they’re in diapers. Monitor their weight and eating. If choking is an issue, make sure staff are cutting the food up or switching to thickened liquids. Make sure their skin and nails are properly cared for. Jagged fingernails lead to injuries. So does dry skin. Check for bedsores if they’re no longer mobile. Make sure your loved one’s room is clean. Make sure they’re being included in any activities that might interest them. In short, everything you’d want someone monitoring for you if you had dementia.

And most importantly, speak up and ask questions. If you feel that anything isn’t quite right, inquire about it. Go over people’s heads if necessary. You are, still, the person that loves them most and is responsible for making sure they get the care they deserve.

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Landscape Design for Dementia Care Facilities

03 Thursday Sep 2015

Posted by emilypageart in dementia, humor

≈ 2 Comments

Tags

Alzheimer's, dementia, dementia care facility, designing dementia care facility, FLD, frontal lobe dementia, frontotemporal dementia, FTD, landscape architect, landscape design, plants, sidewalks

As Mom and I were taking Dad out for a walk (if creeping along like a three-toed sloth counts as “taking a walk,” that is) this weekend in the enclosed outdoor space at his dementia care facility, we started talking about the things we would do differently if we were the landscape architect for the space. In the unlikely event that any budding or established landscape architects are reading this blog, I offer you these suggestions:

  1. Make the walkways WIDE. Like, wide enough for three people to walk side-by-side. Since Dad can’t walk very well on his own, it sometimes requires a person on each side to steady him and keep him moving forward. And even when that wasn’t so much the case before, we liked to be able to hold his hands on each side as we strolled. And, obviously, keep the path as flat as possible.
  2. Put bumper guards along the edges of the sidewalks so that those with wheelchairs or walkers don’t go over the edge and into the plants.
  3. Don’t plant bushes/trees with poisonous berries. Residents with dementia don’t know that they shouldn’t pick things off of the foliage and pop it into their mouths. Think of planting things that wouldn’t be harmful if ingested by a confused resident. There’s a lovely raised bed that they regularly change the plantings in, but I sometimes wish they’d plant herbs and lettuce and other edibles for safety reasons. It might also be a nice activity for some of the more capable residents to help with the planting of the raised beds, since it wouldn’t require crouching down.
  4. Offer multiple benches along the path, some covered, some open. There’s a nice gazebo of sorts at my dad’s place that has three benches. It’s nice for sitting and enjoying the occasional breeze that passes through (the ones that are not emanating from my father’s bowels, that is). It’s a good place to just sit and be – away from the smells and sounds of other residents. When choosing the benches, think in terms of ones that don’t require cushions, or if cushions are required, please, for heaven’s sake, choose the kind that are wrapped in plastic so they don’t get soaked if it rains, thus soaking the tushies of anyone unfortunate enough to sit before checking for dampness. Residents don’t check for dampness.
  5. Check for poison ivy. Frequently. Zealously. Please.
  6. Make sure the fences are sufficiently tall so that the more spry residents can’t climb it too easily. The day we moved my dad in, he did just that – hopped the 6-foot wrought iron fence with the spikes on top. Perhaps consider very large trampolines on the outside of the fence to bounce them back in (now there’s a mental image).
  7. Put out birdfeeders. The residents love to watch for birds and squirrels when they’re in the activities/sun room.

And there you have my unsolicited eleventy cents about landscape design at dementia care facilities. You’re welcome.

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Hospice – A Solution Indeed

21 Friday Aug 2015

Posted by emilypageart in death, dementia

≈ 3 Comments

Tags

dementia, dementia care facility, father, FLD, frontal lobe dementia, frontotemporal dementia, FTD, hospice

Today, my dad was enrolled in hospice. As stated yesterday, this is cause for both relief and sadness. Still processing it all right now and I think I said enough yesterday, but know that some of you would want the update. Thanks for all the support, everyone.

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