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Caring for someone with dementia / Alzheimer's

Posted by @IndianaScott, Aug 30, 2016

Thanks for the great idea, @colleenyoung. I think a specific discussion is warranted given the challenges dementia can present to caregivers.

My mother-in-law (MIL) had what was finally determined to be frontal temporal dementia. She had the disease from her 60s until she passed away at 86. My wife was especially involved in her mom’s caregiving due to some serious denial in other family members and a GP who refused to diagnose, even when significant deficits were obvious (mistaking the UPS deliveryman for her husband and not knowing the difference between roads and sidewalks). The most unfortunate result of this, to me, was the lost time when my MIL and her family could have been having meaningful and important discussions about significant matters of importance to her and them.

In my wife’s years of fighting her brain cancer, she, too, exhibited many of the aspects of mental degradation and physical losses one would affiliate with a dementia patient.

As an aside, for several years I worked for the national Alzheimer’s Association raising money for their research programs nationwide.

I wish everyone struggling with this disease and their caregivers and families strength and peace.

REPLY

@michiganstressedlady

Today is a bad day …He has argued with me sense he got up , non stop about silly things such as how to frame a picture he has , its of an eagle and a wildlife pic so I suggested not having matting around it , but he insist and I don’t really care so dropped it , but he an hr later is still going on and obsessing about it …he says he is going to take a nap but has been up sense he has said that and non stop eating, I tried distraction and that didn’t work , his mind is set on non stop food , food , food, ugh so frustrating ! He also has brought up things I cannot do anything about over and over again from the past ??? Like me not filing for disability myself , I didn’t file because I have needed to take care of him with my fibro and it hurts like heck but I manage, and if I wanted to get caretaker fee I cannot file for it myself but he has gone on and on about how I should have and we would have money if I would have , and etc. over and over again , I told him he is obsessing about it and that its over with I didn’t and we cant change it , but he wont stop telling me how stupid I am , His FTD is terrible today …any suggestions appreciated .

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IF, at all possible, have someone set with him today and you go out to a movie, to visit a friend, to church, anything just to give you a break.  If you can’t do that, when he takes a nap, go light some candles in the bathroom and take a long bath and DO NOT think about your life while you are soaking. Just relax and give yourself a break.  My heart breaks for you as it does for all of us but we will make it – how???  I have no idea but we will survive.  We are all strong individuals who truly love our mates.The Redhead

thank you for the inspiration @tntredhead , you are greatly appreciated , I will try to do that , I have a friend coming over later and maybe they can stay with him for a bit while I go anywhere, nowhere, I don’t care but out of here, blessings to you

@michiganstressedlady

Today is a bad day …He has argued with me sense he got up , non stop about silly things such as how to frame a picture he has , its of an eagle and a wildlife pic so I suggested not having matting around it , but he insist and I don’t really care so dropped it , but he an hr later is still going on and obsessing about it …he says he is going to take a nap but has been up sense he has said that and non stop eating, I tried distraction and that didn’t work , his mind is set on non stop food , food , food, ugh so frustrating ! He also has brought up things I cannot do anything about over and over again from the past ??? Like me not filing for disability myself , I didn’t file because I have needed to take care of him with my fibro and it hurts like heck but I manage, and if I wanted to get caretaker fee I cannot file for it myself but he has gone on and on about how I should have and we would have money if I would have , and etc. over and over again , I told him he is obsessing about it and that its over with I didn’t and we cant change it , but he wont stop telling me how stupid I am , His FTD is terrible today …any suggestions appreciated .

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Hi @michiganstressedlady Sorry to hear it is a bad day. Those are really a challenge for sure! One of the most difficult things for me to come to peace with was the fact dementia causes our patients to not think logically, when we, as their caregivers, are trying to logically figure things out!

As I often said to family members “I have to be very careful in picking my battles.” I went through days and days of “yes, dear” —
“no, dear” and not much else in the way of responding. I also began to ask my patient immediately ‘what do you think?’ or ‘which would you like’. This gave me a mechanism to respond to their suggestions and a response of ‘I agree with you’ as often as I could.

Just my experience though, so your case could be very different I understand.

Peace and strength

@macbeth

@tsoy

Thank you for your information. When the time comes to get someone to help at home, such as a paid caregiver, to enable the main caregiver to run errands, keep appointments, etc., how do you find someone for that service? We live outside of a small town. Is there some sort of agency? Is there a choice? What if the person you get is not a good match – for instance, if there are trust issues or if your vulnerable adult finds the substitute caregiver irritating?

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If you cannot find a CNA school in your area there are books that CNA s use for learning and you can probably find them in book store or even read on line …they teach CNA s to deal with patients and sense us caregivers need to do that I would think they would be helpful to us …I was a CNA for 25 yrs so I know my training has helped me a lot . I still refer to my old books just to brush up on safety and help with dealing with difficult patients ….such as my BF …If you cannot find a book , I will try to find the title for you . I don’t have my books right now as a friend is borrowing to help her father with his problems …I will give her a call though if you need me to . Much strength and blessings @tntredhead / Trish, My name is Debbie btw if you need to talk I am there for you as are all of us here. Its a great place to get help and to vent .

@macbeth

@tsoy

Thank you for your information. When the time comes to get someone to help at home, such as a paid caregiver, to enable the main caregiver to run errands, keep appointments, etc., how do you find someone for that service? We live outside of a small town. Is there some sort of agency? Is there a choice? What if the person you get is not a good match – for instance, if there are trust issues or if your vulnerable adult finds the substitute caregiver irritating?

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https://www.amazon.com/Mosbys-Textbook-Nursing-Assistants-8th/dp/0323080677/ref=sr_1_9?ie=UTF8&qid=1488134560&sr=8-9&keywords=cna+books try this site , it has the book I used and has a ton of usful info @tntredhead / Trish

@michiganstressedlady

Today is a bad day …He has argued with me sense he got up , non stop about silly things such as how to frame a picture he has , its of an eagle and a wildlife pic so I suggested not having matting around it , but he insist and I don’t really care so dropped it , but he an hr later is still going on and obsessing about it …he says he is going to take a nap but has been up sense he has said that and non stop eating, I tried distraction and that didn’t work , his mind is set on non stop food , food , food, ugh so frustrating ! He also has brought up things I cannot do anything about over and over again from the past ??? Like me not filing for disability myself , I didn’t file because I have needed to take care of him with my fibro and it hurts like heck but I manage, and if I wanted to get caretaker fee I cannot file for it myself but he has gone on and on about how I should have and we would have money if I would have , and etc. over and over again , I told him he is obsessing about it and that its over with I didn’t and we cant change it , but he wont stop telling me how stupid I am , His FTD is terrible today …any suggestions appreciated .

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Thank you so much @IndianaScott , I appreciate the fact that someone else out there is going through similar things , I know all our journeys are different but so many of our feelings are the same . Bless you

@michiganstressedlady

Today is a bad day …He has argued with me sense he got up , non stop about silly things such as how to frame a picture he has , its of an eagle and a wildlife pic so I suggested not having matting around it , but he insist and I don’t really care so dropped it , but he an hr later is still going on and obsessing about it …he says he is going to take a nap but has been up sense he has said that and non stop eating, I tried distraction and that didn’t work , his mind is set on non stop food , food , food, ugh so frustrating ! He also has brought up things I cannot do anything about over and over again from the past ??? Like me not filing for disability myself , I didn’t file because I have needed to take care of him with my fibro and it hurts like heck but I manage, and if I wanted to get caretaker fee I cannot file for it myself but he has gone on and on about how I should have and we would have money if I would have , and etc. over and over again , I told him he is obsessing about it and that its over with I didn’t and we cant change it , but he wont stop telling me how stupid I am , His FTD is terrible today …any suggestions appreciated .

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And it is now several hours later and he is still talking about food and what I did wrong …I went and took a nap , we sleep in separate rooms , as he cannot get to our room and needs commode and such near by, I just needed to get away from him for a while and first thing when I woke I told him our friend is coming over and he says well tell him he cant have the new paint sprayer i have in the back of my truck …what ???? I asked what he was talking about and he says …well he will look in my truck and see it and he will beg for it and I don’t want him to have it ! ,,,again …what ???? I mean he jumped several steps ahead to something that hasn’t happened and probably wont happen and has no reason for happening ….I just wanted you all to know how this FTD works, because he is obsessing about something that hasn’t happened and to him the possibility is easily going to happen but it doesn’t make any sense at all.. Now I am really curious as to what the Dr. will say when we talk about the findings in the CT scan as he hasn’t been formerly told he has this but I know 100 % for sure he does …There is no other explanation. and he has every symptom plus some so at least I know now that I am not the one going crazy cause before I started to think it was me forgetting things and conversations but honestly I know now he made the conversations up in his head and he believes them to be real ….I am wondering what stage he is in now then , and how bad or far I will have yet to go …horrid to think about but I am a realist and need to know approximately what and how long this will go on and how bad it will get so I can set my mind into doing what I will need to do …is that horrid of me ;( I sure hope not , I like to think of myself as a helpful person and a patient person , this has been the most trying time of my life , I have never had such a head trip and I mean that literally !

@michiganstressedlady

Today is a bad day …He has argued with me sense he got up , non stop about silly things such as how to frame a picture he has , its of an eagle and a wildlife pic so I suggested not having matting around it , but he insist and I don’t really care so dropped it , but he an hr later is still going on and obsessing about it …he says he is going to take a nap but has been up sense he has said that and non stop eating, I tried distraction and that didn’t work , his mind is set on non stop food , food , food, ugh so frustrating ! He also has brought up things I cannot do anything about over and over again from the past ??? Like me not filing for disability myself , I didn’t file because I have needed to take care of him with my fibro and it hurts like heck but I manage, and if I wanted to get caretaker fee I cannot file for it myself but he has gone on and on about how I should have and we would have money if I would have , and etc. over and over again , I told him he is obsessing about it and that its over with I didn’t and we cant change it , but he wont stop telling me how stupid I am , His FTD is terrible today …any suggestions appreciated .

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I cried when I read your experiences. I cried for you and for me.My husband is slowly and consistently leaving me as Alzheimer’s robs his brain. He also has spatial dimentia with it’s own unique symptoms. He can come into the living room, for example, but not know how to get to the bedroom. He can’t recognize the door that leads from our apartment to the hallway where the elevator is located. So all day I must guide him to where he wants to go. He can not be left alone. Just now he was watching me and he does that a lot. Now I am somewhat used to it but it’s still a bit disturbing. It is like a boss micromanaging all the time. I asked him what he wanted and he said I can’t find what I’m looking for and I  can’t remember what it was. So I started asking him questions and he said oh yes. He said I want my shirt and I want to say it but I don’t know where they are. My answer to him was,  I am here for everything at any time all you have to do is ask me because I love you. And then I told him it was also because I am a very bossy person and it made both of us laugh and it just cut through the stress for both of usIf we have a converstion, I must instigate it and carry the conversation. I am discovering that he now is becoming more confused with the facts concerning our conversation. Our neighbors across the hall from us put their condo on the market. It sold. The next morning my husband said that we were going to have to move because the entire Condo building was sold. He was very concerned as to where we were going to live. It took several conversations and several days for him to stop talking about our having to move out of the building.I am blessed that he is a gentle man and does not scream and yell at me. I look at him with loving eyes as he holds onto me telling me how much he loves me. But the holding on has become more clinging onto me as he mentions he knows he has this horrible disease and I know he is scared although he has never said so.At night when he gets out of bed to use the bathroom, he can not remember where the bed is although it is right in front of him and he goes into another room. I was concerned that if I did not wake up, he could go out the door into the hallway. I found a small motion detector, about the size of two decks of cards, from Amazon for about $30 that I turn on every night and put it in front of the door. It makes me more comfortable knowing if he crosses in front of it, the alarm will alert me. He has done it once and was literally shaking when I reached him. I told him it was to keep us safe from intruders and he had no problem with that. And so the time passes. No longer do we have walks on the beach because he is so unstable walking and falling happens too often. No longer can I sit down and read a book along side him because he can’t comprehend what he is reading and has a  very short attention span. No longer can I have a dinner with a lovely table cloth on my table and now must use plastic place mats because a lot of food misses his mouth and ends up on the table or on a large napkin on his lap. Even having him use a spoon rather than a fork has not helped. No longer can I sit down at the table without first having to help him sit because he can’t judge where the chair is and almost falls off of it. He started not pulling the chair away from the table bit rather moving on to it from the side. So now I am the chair lady helping him to fully sit on the chair. No longer can we travel to far away places as he can’t handle long flights. A 5 hour flight with no stops and a bit of medication is possible but not relaxing for me as he only sits and stares straight ahead. Watching a movie is not an option as the ear pieces are uncomfortable.Several months ago, he didn’t recognize me as his wife and felt I was a new girlfriend, with privileges, which made life very interesting to say the least. He told me all about himself and asked me about my life. His most asked question was how old I am. That was the last thing I wanted to have him ask EVERY MORNING when we would wake me up.He has always been a very kind gentle man and that continues. However, he will get something in his head anf will not let go of it until I feel  I want to scream. And so I do by opening the refrigerator door, putting my head inside and quietly scream to release the stress.Because he gets lost inside our apartment, he no longer is he allowed to go any where by himself. This has been very difficult for him as he was a walker and would leave every afternoon for a two mile walk by himself.  Several months ago he started attending Adult Day Care 2 full days a week. It certainly has helped my stress level. From all of this I take the position that every moment of every day is going to give me a different challenge. How to best handle it I have found is to add as much humor as possible although sometimes it’s very difficult to find humor. But it does clear the air after both of his have had a good laugh. Sometimes I just dance around and act silly.It sure feels good to have this conversation with you. I really needed it.

Ok, I wish everyone well, but I have to go to bed just to save my sanity ….I just gave him a shower and being 520 lbs he decided to get on his knee’s which I told him not to do that , and he wont listen , so he got stuck on his knees in front of shower and couldn’t get up ! He flailed around until I could get him to listen to me , which would have been better if he would have from the beginning but finally using his cane and the counter and the toilet seat I got him to follow direction s and got him up …. What an ordeal , … Then to top it off he told me he better get his things in order now and get life insurance so he can leave his brother something and his nephew , and now that he is getting bad he said he figured it was worth it, Am I not worth it ? Then he said he didn’t want to marry me because he figured out… why should he, and then he said he might want to cause he might want to have help in the future…. what the **** …. I have been with this man for 12 yrs , taken care of him for all of that time , doing lawn work, house work ,laundry ,cooking , and everything sense I love him and taken care of him as he has been in the hospital and bedridden a majority of this time and he has never been able to do anything for the past 5 yrs. and he has said all these nasty , rude and totally mean things to me that have made me feel just awful and angry , and I feel like crying but also like I have done everything for nothing , no love back ;( …. is it the disease or him ? idk ,,,, I honestly don’t know what to do , do I let him stay because I still love him and take care of him because its the right thing to do ,,,,or do I say go to a home , because I would feel awful if it was the disease talking and not him , if I go one way , and on the other, can I live with such disrespect with this disease he has for another ? how many years ? Totally confused and upset right now , hope tomorrow bring s a better me , and maybe sleeping will give him some time to process what he has said . I sure hope so , or praying tonight to ask God to give me the answers in all this . I know he has no one else , so believe God gave this to me to handle , no one else would be able to do this for him as he is so aggressive and I know his family wont help….not unless money is involved , then they will come out of the woodwork.( only after he has passed , they wont help him now while he is alive and needs it ) He has had very little money for yrs now , and we live off of very little , The man I knew is gone , and I guess I am grieving in a way . is that it ? I just don’t understand this at all . I hate bvFTD ! So sorry to you all , my apologies, as I had to vent or explode, Off to bed now and hoping and praying you all are having a better day and night then I am , Blessing s to you all

@michiganstressedlady

Today is a bad day …He has argued with me sense he got up , non stop about silly things such as how to frame a picture he has , its of an eagle and a wildlife pic so I suggested not having matting around it , but he insist and I don’t really care so dropped it , but he an hr later is still going on and obsessing about it …he says he is going to take a nap but has been up sense he has said that and non stop eating, I tried distraction and that didn’t work , his mind is set on non stop food , food , food, ugh so frustrating ! He also has brought up things I cannot do anything about over and over again from the past ??? Like me not filing for disability myself , I didn’t file because I have needed to take care of him with my fibro and it hurts like heck but I manage, and if I wanted to get caretaker fee I cannot file for it myself but he has gone on and on about how I should have and we would have money if I would have , and etc. over and over again , I told him he is obsessing about it and that its over with I didn’t and we cant change it , but he wont stop telling me how stupid I am , His FTD is terrible today …any suggestions appreciated .

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@foxylady42

Thank you for this post. Our situation is very similar to yours; however, I believe that my husband is not quite as far along as yours, still being able to eat without spilling much, and not yet having as much trouble with seating, but is becoming more unstable on his feet. He still knows who I am most of the time. He uses a CPAP machine at night, and needs help with it each of the numerous times he goes to the bathroom at night, but still finds his way back and forth otherwise. He has always had a mild personality, but now, on seizure medication, there are some dicey angry outbursts, but those are not very common. He no longer has the attention span to read or watch a movie, but still wants a daily paper for the sports section. No trips. Constant supervision. He is often unable to remember what he is doing or saying. He has gone from being confident and self sufficient, to being very vulnerable and incapable. It is heartbreaking. I miss the old him, yet, the memory of how he used to be is more and more difficult to retrieve. We’re still in our house, but need to sell it soon and move into town – it’s just too much to take care of. De-cluttering the house is difficult enough, but I can’t imagine how to organize the shop and get rid of all that stuff, or how to handle the meltdown that will cause him. I don’t very much care about “stuff” any more. I would give it all up in a heartbeat to have my husband and a normal life back. My husband is not yet at a stage where I could leave him at a care facility for a half day, or any amount of time, and I have not found anyone for “companion care”. His Medicare and supplement will only pay for help from a registered CNA, associated with a Medicare affiliated facility, otherwise, I have an acquaintance who would spend time with him. I could really use some help and time away, but there is no one near to help, and he is used to being with me 24/7/365. His body is very healthy. Only his brain is ill, so this could go on for years and years. When the house does sell, I have considered moving from MN to somewhere where we could get around better year around, but I don’t know where. Do any of you know of an area that has more services for dementia patients, and a more hospitable climate?

Macbeth

Liked by ladycat

@michiganstressedlady

Today is a bad day …He has argued with me sense he got up , non stop about silly things such as how to frame a picture he has , its of an eagle and a wildlife pic so I suggested not having matting around it , but he insist and I don’t really care so dropped it , but he an hr later is still going on and obsessing about it …he says he is going to take a nap but has been up sense he has said that and non stop eating, I tried distraction and that didn’t work , his mind is set on non stop food , food , food, ugh so frustrating ! He also has brought up things I cannot do anything about over and over again from the past ??? Like me not filing for disability myself , I didn’t file because I have needed to take care of him with my fibro and it hurts like heck but I manage, and if I wanted to get caretaker fee I cannot file for it myself but he has gone on and on about how I should have and we would have money if I would have , and etc. over and over again , I told him he is obsessing about it and that its over with I didn’t and we cant change it , but he wont stop telling me how stupid I am , His FTD is terrible today …any suggestions appreciated .

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oh @foxylady42 my heart aches for you and your husband , I am so glad to hear about someone with frustration , although that sounds bad , I don’t mean it that way it only makes me feel better that I am not the only one , and I understand why you have it , believe me ! And I do believe it is only our human side that makes us this way and its normal , I am glad that you find some humor in this , and it does help, You brought a smile to me with the refrigerator , LOL , sounds like something I do , I also pretend in another room where he cant see me that I am strangling him , not in a bad way but like a funny way for me to let off steam . I wish I could speak with ppl about this but he listens to everything I say at home and I don’t have opportunity to leave him often , so when I get frustrated I cant really tell anyone …that is until I found this place, I don’t know what I would do if I didn’t have this place, its a godsend … Prayers for you and your husband , and I pray that you both get through this with as little difficulty as possible , Blessings to you both , and a huge thank you for your story and sharing , as you may have saved a life tonight with it , !!! Mine

Liked by ladycat

@michiganstressedlady

Today is a bad day …He has argued with me sense he got up , non stop about silly things such as how to frame a picture he has , its of an eagle and a wildlife pic so I suggested not having matting around it , but he insist and I don’t really care so dropped it , but he an hr later is still going on and obsessing about it …he says he is going to take a nap but has been up sense he has said that and non stop eating, I tried distraction and that didn’t work , his mind is set on non stop food , food , food, ugh so frustrating ! He also has brought up things I cannot do anything about over and over again from the past ??? Like me not filing for disability myself , I didn’t file because I have needed to take care of him with my fibro and it hurts like heck but I manage, and if I wanted to get caretaker fee I cannot file for it myself but he has gone on and on about how I should have and we would have money if I would have , and etc. over and over again , I told him he is obsessing about it and that its over with I didn’t and we cant change it , but he wont stop telling me how stupid I am , His FTD is terrible today …any suggestions appreciated .

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We are always here for you! Totally get your challenges, had a whole day of my LOML of 20 yrs being on a tear about no real anything. Things we deal with, having to find a car to replace my 2002 little Saturn is daunting for him to say the least. I am learning to yes him to death, not talk about much of anything real, showing him pics in my tablet he seems to like. Will try those coloring books made for adults next. He likes crossword puzzles so maybe will like to color. He mimics what I do at times, have been told it’s part if his right front brain injury from his carotid stroke. Today the dinner plate was perceived to be uneven on the bottom, I just agreed thereby validating him and relieving some anxiety. Prayers for You and all of us, I love the people in this group, they truly are the best!!

@michiganstressedlady

Today is a bad day …He has argued with me sense he got up , non stop about silly things such as how to frame a picture he has , its of an eagle and a wildlife pic so I suggested not having matting around it , but he insist and I don’t really care so dropped it , but he an hr later is still going on and obsessing about it …he says he is going to take a nap but has been up sense he has said that and non stop eating, I tried distraction and that didn’t work , his mind is set on non stop food , food , food, ugh so frustrating ! He also has brought up things I cannot do anything about over and over again from the past ??? Like me not filing for disability myself , I didn’t file because I have needed to take care of him with my fibro and it hurts like heck but I manage, and if I wanted to get caretaker fee I cannot file for it myself but he has gone on and on about how I should have and we would have money if I would have , and etc. over and over again , I told him he is obsessing about it and that its over with I didn’t and we cant change it , but he wont stop telling me how stupid I am , His FTD is terrible today …any suggestions appreciated .

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Like this advice. Thank you so very very much. Had a rough day. You helped me a lot!!! (Caring for frontotemporal love of my life).
Very very helpful. We logic it out, our affected loved one don’t. Like that very much!!

@colleenyoung

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I’m tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

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Just a little FYI if you don’t get his DL renewed (probably I good idea that he not drive anymore) you can and should get him a state identification card. You do that through the DMV. It looks similar to a DL. It helps for those times he needs identification like flying, etc.

@colleenyoung

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I’m tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

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Great idea. Thanks. 

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