Do I need to die well?
Warning: some may see this post as a rant; it is. Anway, I thought I had some things settled; such as, I don't want to die at home, and I probably will not talk to my kids about their opinion on this subject.
Now, however, my mind is changing again. I spoke to the social worker at my cancer hospital recently on this topic. She has 25 years of experience with mets patients. I told her I didn't want to die at home because of lack of support, my kids possible fears and my worries that they won't want to stay in the home, and my possibly feeling more secure somewhere else.
She said that I should consider dying at home because it will be a great gift for my family and friends to take care of me at the end. Also, I should ask my kids where they think I should die. She said in all of her years of experience no patient has ever come back and said that her advice about dying at home is wrong.
After seeing her I finished a book called "dying well" which in many ways is a great book. I don't regret reading it. Now, however, I feel pressured to not only die, but to die well. I always want to do a good job at things, and I don't want to deprive my family of taking care of me if this is their wish.
Many will say that I should just do what I want, but I do have my family to think about. All the stories in the book supported what my social worker said and the benefit of letting your loved ones nurse you in your final days.
Anway, not sure what i am looking for. I know many people will have stories both good and bad. I am interested in other people's decision process, if they choose to share it.
Thanks so much.
Comments
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Well, first I have to insert a bit of gallows humor at the comment that "no patient has ever come back and said that her advice about dying at home is wrong." That just sounded funny - like - nobody asked for a do-over?
My husband talks a lot about how he will care for me when I die. And I know that he will. I'm not one who likes a lot of hovering, so I don't really think I will want my four sons hanging around, and I really hope that when the actual moment of death comes that there is privacy. You always hear "so and so passed away peacefully surrounded by family and friends" and that freaks me out because it sounds like being on exhibition.
I do plan on using in-home hospice care. I believe most insurance pays for a visit every day when it's near the end. They take care of iv's, catheters, that sort of thing.
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You are right about the gallows humor-I really need to proof my posts better! I meant to say no patient's family. But you gave me a good laugh on a down day.
I definitely plan on using hospice and on consulting them early-whether at home or elsewhere.
Meanwhile, I am still smiling. Hope you are feeling better. Have a good weekend.
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I hope it is ok to post here.
My Mom died of cancer 18 years ago. We all had very young kids & no one felt we were prepared to help her at the end in one of our homes...Just having all these kids around under 3 would have been hard for my Mom- The noise, etc.
She was in hospice for her last 2 weeks. Before that she did want to die at home...Without asking us she changed her mind & went to hospice...I think her pain was too great.
I regret not being there for my Mom (I was 28) to take care of her when she needed me. I think I feel that way more because I do not think then 18 years ago she got good hospice care.
I wish I would have been there for her. I feel like I failed her.
Pam
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GREAT topic. I am so torn over this...One moment I am think I need to go to HOSPICE to die, but then again, so many people I know who have had parents that died, cherished and wanted every last minute with them.
Do I want the last memories of me for my boys to be a delusional sick mother dying...or good memories when their mom was fat and full of life, but then went away and died? I don't know....
If I am in A LOT of pain, and nasty looking, body fluids icky, trouble breathing...I rather die in a place with limited contact. I don't want family and friends to remember me that way.
HOWEVER,
I was with my grandma when she died. She was in/out of being Looney tunes, as my mom calls it. But truthfully, I was so glad that I was with her when she passed. It was peaceful. I said Hello. she said she liked my outfit (came from work). I asked her how she was feeling. She said "like shit" lmao...My mom and I were talking...Grandma fell asleep and died. peace. That is the way to go? NO??
Dying is a part of life. To be there when someone dies is a gift. Do I deny my family that gift?? is it selfish..
If the passing is peaceful and beautiful, what is there to fear?
This is so hard. I tried to talk to my husband about this...he wont do it. I don't want to scare my boys, yet...but when the time comes, I will ask them, my parents, my siblings...and my bestest friends...
It sucks. Truthfully? I would want to be there if my siblings/parent/child were passing into the next life...to be there..holding there hand.
Janis
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DH and I are to the place that we talk about my death pretty routinely, but still it almost always makes me teary. Maybe that will change after I get me some happy pills. I am so thankful that my children are all adults and understand what's going on, but I don't want my grandchildren to be left with scarey memories. I don't know if I would have a different opinion about dying at home if there were young children living here. I do think that it's been something that has happened at home through all time until the recent past, and we have removed the dying process from family life. That seems unnatural, and yet it's easy to see that it might be more comfortable, emotionally. But I gave birth to three of my four sons at home, why shouldn't I die at home?
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I want to die the way I want, not what a book or social worker tells me to do. I want to be selfish, it's the last thing I do and it's gonna be my way. Hopefully I will be able to prepare my loved ones as best I can before the big event. Then it will all be about me. I want to die at home with my Mom at my side. I will need my Mom and I can't imagine her wanting to be anywhere else than at my side. Same with one of my sisters. The other siblings aren't invited. I don't like the idea of a hospital, no matter how many of my belongings are there to make me comfortable, I want to be in my own bed, my own home. With my sister as a doc I know she will make sure I'm comfortable. I know it will make me a burden on whomever gets stuck with me, but well, all I can say is sorry about that. Of course this may all change when the time gets close. But the one thing that I will always want is someone with me, someone who cares about me, I wouldn't want to be alone.
Edit: Pookie -- I think you should do what you want, what is in your heart. Consider everything (i.e., kids/no kids, home/hospice) and do what your heart and mind tells you to do. That's all I can think to say about this.
Another edit: I also think, if I'm in la-la land and it is certain I won't wake up in a moment of clarity just before I die, I think my health advocate (sister) can decide what is best for her and Mom, since I will be so out of it, it won't matter what I want, I won't care. Does this make sense? Pretty well do it my way as long as I know what's going on, if I don't, do what's best for my Mom and sister.
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In 1986 my Aunt Jean and my Mother died about 4 months apart from bc. I was present for both. My aunt was at home with my uncle tenderly caring for her and I supported him. It was what they wanted. My Mother and stepfather never discussed how Mom wanted to pass--she never talked with me at all about her bc--I was in my 20s, and wished she had, but it was her choice not to. The stepfather called me one morning and said she was in the hospital--she had been fine. I flew home and went to the hospital and saw she was breathing like my aunt had been, I knew immediately it was only going to be hours. My dear old stepfather went home, and a little while later my mother died in my arms. That was November 2 1986. My first child was born November 2 1988.
I felt honored to be with both my mom and aunt, but I think each family has to decide what is best for them. I know several families that have used in home hospice and it has been a great experience for everyone. I think it is important to talk about it even though it is scary, but each woman ultimately needs to be supported in her choice, in my opinion.
Respectfully,
Karen
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We had home hospice for my mother when she died. Like many cancer patients, she had been in and out of hospitals a lot over the previous year. Once she was declared terminal, she just wanted to stay home.
The last week of her life, almost all of her seven children gathered in the house with their families, some from quite a distance. Being able to stop in and sit with her whenever she was coherent was a blessing. And when she dozed, we were able to catch some sleep ourselves or do some housework.
I had my then five month old daughter with me, and she loved seeing her...her first granddaughter and a redhead! Before my mother lapsed into her final coma, my sister-in-law brought by her brand new, 2-day old baby, a second granddaughter, named for my mother. That gave her such joy!
As for your fear about leaving sad memories in your home for your children, all I can say to that is I'm living in my parents' house now, in the bedroom my mother died in. It holds no bad memories for me, maybe because there are 50 years of happy family memories that outweigh that one sad day.
No one walks by my room and says, "That's the room Mom died in." It's "Nancy's room." It was my room growing up and it became my room when I moved back. In between, my mother "borrowed" it for her final days. And I feel honored that she did.
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Both my parents died in hospice in the hospital. We made sure they were never alone, there were at least 2 family members there at all times, night and day. We were glad the nurses were there for the body functions, pain meds and refreshing of the bed. It gave us a mental and emotional break to leave and let someone else take our place. There was no guilt about who "was there" for them.
I want to die in the hospital in hospice. The removal of my body will be quick and efficient and I'll know that the needs of that same body were previously dealt with by professionals.
I don't want a "death watch" hovering over my bed. We made sure we chatted, read or did crosswords or whatever when we were with our parents. In fact, my daughter and I celebrated New Years Eve 2005 in my Dad's hospice.
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perhaps I can give another perspective to this discussion. My husband wanted to die at home. It was just me there taking care of him. His sisters and parents had previously died. His children from his first marriage (3 of them) had no contact with us, although I kept them informed via emails.
Our only son lived over 1000 miles away and I spoke with him daily. With each crisis event - ER trips, hospital stays, our son flew into town and towards the end, he was able to spend 2 weeks over Christmas with us at home. We put up a tree, took zillions of pictures, made and ate our favorite foods, laughed and cried together. It is a lovely memory for me and for our son.
We had set up our family room for my husband - computer, sofa bed, TV, bathroom close by, telephone, most of what he needed. Our house was 4 levels, and you had to go up or down from the family room to go outside or to the car.
I had mixed feelings about him wanting to die at home, but it is what he wanted. One day I went to the grocery store and had my cell phone. He called almost as soon as I was down the road and said he felt terrible and to come back home. I asked if he wanted the ambulance and he said yes. I told him if he could get to the front door and unlock it ok, if not, just stay where he was.
I called 911 and had the ambulance on the way as I zoomed back home. We both arrived at the same time and he had been able to get to the door and unlock it. Jumping forward, he died 5 days later in Trauma Intensive Care. Our son and I were at his side and he was in no pain. Up until almost the last moments he was able to nod and gesture to us and write on a tablet. He was on a full face mask for oxygen and could not talk. IV for morphine, various tubes and monitors also. he slipped away peacefully with both of us at his side.
We lived in that house for 33 years before he died. I do not know how I would have felt if he had died at home. All of my good memories in that house do not take away from the last weeks he was suffering. They are not "bad" memories, and I am glad he got to spend as much time in our home as he wanted.
I know this is a long post, but as the widow of a cancer patient, I wanted to share my experience. I sold our house 2 years ago and do not think of it as the place where his health declined and where he prepared to die. I think of it as the place we used to rear our only son, the place we had wonderful meals and visits with friends, and the place we called home for 36 years.
Hugs, nancy
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I have arranged for my final days to be in a hospital care unit... especially set up for palliative care. It is near my home and there is a bus from my home to the hospital. My cat can visit or stay. My friends will be there as they have always supported me. My family will be able to continue to live in our home without the memory of mom died here. I made the decision and have the support of my husband. If I am not too bad, my girl guide troup can visit and have their meeting there. It meets all my needs. It is cosier than the usual hospital setup and I have care 24/7 without wearing out my family and friends. I also have made arrangements for someone to notify you when I am going into the hospital.
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Good topic for discussion. I've been doing the ostrich thing but I need to work this out. My husband won't talk about it.
I don't know if the choice is ultimately mine. This is the scenario I envision:
My husband works night and day now. He has to because I'm not working and he's self-employed. If he doesn't work, the bills don't get paid. I can't honestly see how he'd take time off work to care for me AND the kids. We do have insurance so if the end were near I suppose there'd be money somewhere.Okay, so I have my best girlfriend. She also works full-time. She can be quite aggressive at times and I could really see her stepping in to take charge - so much so that my hubby would be pushed aside (or, because he has a wicked temper), there being a scene over who the decision-maker is. Right now I have a living will and my husband has medical power of attorney but under the circumstances I just don't know. My husband has never cared for someone sick (let alone dying). What would he do?
I also don't have a lot of faith in our health care system right now. They're restructuring the palliative unit at my local hospital and laying off almost all the RNs and replacing them with RPNs and PSWs. The unit's in an uproar right now (I have insider info). Lot's of nurses with seniority feeling pretty angry (and rightly so).
So it's tough for me to decide. I just pray the end isn't near because I don't have this sorted out and it's been mentally bogging me down thinking about it.
Dreamweaver, wow, you've got it all planned. I'm glad to hear there's a place in our neighbourhood that is so supportive for you. I'm kinda down on the system at the moment.
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This is something you and your family have to decide. But let me tell you my story. I lost my husband at the age of 40 to kidney cancer and my mom to breast cancer. Both suffered terribly. I was young and the care giver of my husband. He died in the hospital in intensive care after 2 days in a drug induced coma. Mom however, was at home until 4 days before she died. Dad was her caregiver as my sister and I had to work. We had no way to support ourselves without our jobs. So, dad was sole care giver. We went in the evenings etc. So, what happened my dad the caregiver got sick from the stress and ended up in the hospital. So, now we had no choice but to take care of both of them. Trust me. And I know that everyone will jump down my throat on this one but its harder on the caregiver then the patient at times. Dad was so stressed and sick. Once mom passed he realized she was no longer in pain, he didn't have to deny her any more morphine as she wanted it all the time and was begging for it. I know how it broke my heart when she would cry she was in pain and need more morphine. She had just had a huge dose an hour ago. Trust me when it happens to me I want to be in a hospital or hospice and not a burden to others. And trust me my family would not think of me as a burden but being through it I know I would be.
Donna
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Barbe1958, Put into words, what I found so hard to explain. My Mom and baby Sister, both died at home, with me taking care of them. The end was peaceful, but getting to that point, was both physically & mentally exhausting. Those memories, will haunt me forever. The Daily visiting VON emphasized to me, how much more humane it was for loved ones to die at home. But I feel there are certain cases, in which this is incorrect. I feel it took away my right, to be just a daughter & big sister. Instead, my main roll was that of a caregiver. Hospice personal are educated to deal with very difficult circumstances, that we are not. In mentioning this, I do recognize that each and every person has unique experiences. VON visited daily. They left me specified info on how to administer pain meds. I followed those instructions precisely. I am going to share with my breast sisters an experience I had, that I will never share with another sole. This knowledge would cause substantial anguish to my siblings and it would consume & destroy my Dad. Unexpectedly, at about 3:00am in the morning, my Mom started to experience severe pain., which in turn, caused her to have a seizure & stroke. The duration of the seizure/stroke was about 2 minutes. I thought she only had moments to live. Her body lay stiffened and curled in a very awkward way, only the whites of her eyes showing & her hands were stiffened into claws. I wrapped her in my arms, and for hours told her over & over again, how much we loved her, how proud and blessed we were to have her as our Mom. While I was holding her, over time, her body slowly relaxed. She passed away a few hours later. I am convinced that if she was in hospice, this wouldn't have transpired. In hospice there would have been trained professionals there, iv meds & increasing meds at the first sign of discomfort. I live everyday with the memory of my Mom in so much agonizing pain, that it drove her out of her mind. Such a strong individual all her life, reduced to begging me for more pain meds. I choose hospice. That way, my daughter can be just my daughter and my husband just my husband.
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Hmmm. I'm starting to have second thoughts having read these posts. What is more important -- my vision (perhaps naive) of dying peacefully at home, or trying not to be a burden? If I can't be comfortable at home, certainly take me to a hospital. When the time comes I guess I'll have to talk to my Mom and sister. I don't have a husband or children to worry about. I sound like a big baby, but all I want is my Mom near me when I die. I just don't want to be alone. Maybe it's not the location, it's who's with me that is the biggest concern to me.
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Dearest Elizabeth; You are right. It's not the location that matters. It is who is there to hold our hand, when the time is near. My daughter & Husband will help me pass from this world. And my Mom will welcome me with open arms on the other side, I miss her soooo much. I couldn't ask for anything more.
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Good topic. It what about I think every day. My landlord told me I can't die in his house. Some times, when i'm very sick, he scrim on me and want to let me in the street, because I can't' clean his house and make food for him. I rent room in his house. I don't have now place, I'm waiting for my free apartment and praying about this every day. I hope I can die in my bad, in my place and no one can tell me in this time I have to clean house, do laundry, make food, sale kittens. I feel now like I'm slave.
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{{{{{{{{ Irina }}}}}}} I pray you find a safe haven....
I also watched the professionals use suction to clear both my Mom and my Dad's airways as they had very laboured breathing with a lot of fluid and sounded like they were drowning. I don't think I would have put the wand so far down their throats! Would I do any good then? But it was terrifying to sit and listen to them trying to breathe! I was sent out of the room while they wiped my parents down from bowel movements. I'm glad I didn't have to see that, but I did see them turn my Dad over and start to wipe, that's when I turned away from the door. It only happened once near the beginning of their coma's as after that there is nothing to pass.
I agree with Elizabeth, it's not where I am, but who is with me.
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Irina -- that is terrible! I hope you get your new apartment soon! Can't they bump you up to the head of the line since you're stage IV? I'd still go back to that ass's place and die on his front lawn just to spite him -- what a terrible man!
I'm really re-thinking this now -- ewwww, suction, poop.... So much for my vision of wearing a pretty nightgown, a small angelic smile, and just not waking. I'm serious, that was the big plan. I was with my Dad when he died, but it was quick and neat in the ICU. Crap. Now I worry about looking horrible for my Mom. That won't be nice. I hope I go quick.
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I know this is not a funny topic, but Elizabeth I ROFLMAO picturing a bunch of us, keeling over on that A$$hole's front lawn!!!!
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I am not Stage IV but would like to share a couple of things with you. My step-father (the only father I've known) was in 3 different hospitals for 4 months before he passed from his heart attack. I gave him CPR while waiting for the EMT's to arrive. I quit my job and was there with him 24/7 most of the time (200 miles away) . I helped care for him, suctioned him, bathed him and sat and watched Andy Griffith with him. I was there the morning he died. Not everyone dies "peacefully" his last two breathes involved throwing up. No, it wasn't pretty. I would do it all again. I was there the day my mother-in-law passed away while in Hospice care from liver disease. The Hospice nurse was paged but arrived after she passed. Her death was not pretty or peaceful either. She bled out - which is not something I would wish anyone to see.
I guess what I'm saying is that I don't regret being with either one of them. I do know that my husband will be worthless when the time comes for me. I also know that my son will be with me 24/7 if I choose to be at home. He helped me during chemo and surgeries.
I admire the strength of each of you in making the decision. I told a friend once to listen to her heart and follow it. She did and passed at home. Her children were so happy they were there with her during her time and when she crossed over.
Blessings to each of you.
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Dear Lizws; Thank you for sharing with us. It doesn't matter if your stage 0 or stage IV. This disease is so very unpredictable, we are all in the same boat. (((Hugs)))
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I guess from what I have read, I should find a place to die. Not to be a burden. URGH. I hope I get the choice. Who will wipe my drool?
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Fitz, I'll wipe your drool!......Honestly, though, I was 8 when my mom passed and watching her grow weaker and weaker everyday over a couple of months was extremely hard....She was a very active person and kept her house spotless and even swept the grass after my brother mowed so there wouldn't be any lines of grass everywhere.......After she got so sick it was really hard on us kids cause the people who came to care for her really didn't care for us.....We had to fend for ourselves.....When my mom died she died peacefully at home in our living room....I really miss her to this day...It has been 37 years since she died and it feels like yesterday some days.......
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Fitz -- I think there will be people falling over themselves to wipe your drool!
Some people have a hard death, some pass so gently. I hope it isn't messy for me -- once it gets to that point I'll probably be drugged into oblivion so it won't bother me much, but I don't want that for my Mom. I can see me saving up my pain pills so I can take a whole bunch and end it quickly. I sooooo much want it to fit my pretty fantasy. I keep joking with myself, to make it easier. Since it will probably be my liver, I'm thinking of coordinating the colour of my sheets to match my jaundice. Morbid, eh?
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Both my parents had a DNR on file as Dad had lung cancer and Mom liver. The hospice/palliative in the hospital wouldn't perform heroics on them, just keep them comfortable. After about 5 days at my Mom's side I asked the doctor if he could just give her "too much morphine" as she had been in a coma for 4 1/2 days dying. He said he couldn't, but we could. He said the nurses would giver her morphine every time we asked them to. So every time she twitched, we did. My brother still thinks we killed her, but she was so far gone already at that point there WAS no point. We didn't want her to get to the point of bleeding out like lizws experienced!
I think the hardest thing for a parent is to watch their child die, but I would be there. I don't want my kids to see the whole process, but hope they are with me at the end. The nice end....
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I'm with you Barbe. I don't want the final memories my kids have of me, to be that of a drooling zombie etc. The minute I'm deceased, I want my body to be transferred to the morgue asap..
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I took care of my mom at home and she died in my arms. She had pancreatic cancer but was pretty much pain free and her death was expected and quiet. She was ready to let go. From a child's perspective, this is what I think.( I was 45) I wanted to be with her. She was the first to hold me when I came into this world and I wanted to hold her as she left. However my last memories are not of the funeral, but are of her last breath. And there is something to be said for being able to walk out of the room and have hospital staff there. I watched Mom go out in a body bag and although the funeral director was very kind, I thought of nothing else for about 6 weeks. The re-runs were emotionally disturbing. So if I do it, I will be somewhere where that extra burden will not be on my already grieving family be it hospice or hospital.
Sorry if this seems cold and insensitive.
Deb
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None of your comments are cold or insensitive. As much as dying is expected,normal or gonna happen no matter what - it is final, the end, all over with. I do not mean to minimize traumatic, unexpected deaths such as accidents, but I think the focus here is death because of cancer or its complications.
I am also not Stage IV, but I would hope when it is my time to go, that I go quickly and quietly. I also do not want someone to find me dead on the floor. That is one reason I want to be in a hospice or hospital setting.
We make zillions of preparations for a birth. Why can't we make a few for death? Other than a place to put our remains, pre paid funeral, most do not even discuss it. Is this right or wrong? I don't know. It is an uncomfortable topic to discuss. No one invites the funeral director over for a chat...
Quite frankly, death is not a pretty thing. If a person is in pain, has tubes and monitors attached to his/her body, is old and wrinkled, thin and weak, fat and puffy from fluid retention, etc, etc -- not the way anyone wants to remember a loved one.
I cannot tell anyone else what to do or how to do it. I can only offer my experience and thoughts. Hugs, Blessings, Nancy
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Elizabeth, I think lavender sheets would complement the jaundice nicely.
Barbe, you did the right thing to help your mom's passage. I hope my family has a similar opportunity, I know if they do they will take it. I only hope they don't get themselves in any trouble, and show good judgment.
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