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I am new to posting here. My mother is 96, and totally bedridden, incontinent, and has to be fed, and has dementia/Alzheimers, and lives with myself & my husband. I am her only caregiver, but do have enriched nursing care come 1-2 times a week in to monitor/help care for her pressure ulcers that only recently started to develop. All the nurses say that I am doing an excellent job of caring for her, given the situation. I am always feeling guilty that I am not doing enough, and know that she may be soon reaching hospice level - she has been on the decline for the last 3 years, in the past year, losing the ability to walk, and now has to be fed almost like a baby, and is sleeping a lot more lately.

My Father's dying wish was that I 'take care of mother' and I have tried to do the best I can. It was also her dreaded fear that she would have to go into a nursing home, and she often stated she would rather die first. I promised her that I would take care of her, and also do not want her in a nursing home. She was always dependent on me for most everything, and I have tried to be a good daughter, but find myself often feeling resentful that she always demanded a lot from me, even when Dad was alive. In fairness to her, she was a good & loving mom, as far as she knew how to be. I also adored my Dad, and miss him very much - we had a loving home because of both of them. I am now almost 64, and I am worn out & stressed out, as I also have to care for my husband who cannot do much because of his COPD. My only sibling is a brother who lives in the next city, and is handicapped, and he & his wife are dealing with her elderly mother, so I can't expect much help from him, and want to remain on good terms with them. I don't expect him to come over & help, which would be difficult for him anyway.

I guess I would feel better if I knew I wasn't alone in feeling pulled in 2 directions - guilt that I'm not doing enough for her, and resentment that I am doing all of this on my own. I have faith in the Lord, and ask for His help daily in caring for her & dealing with all the emotions that go along with seeing her decline - anger that she is like this - like "WHERE IS MY MOTHER & what have you done with her"? I want so much to be able to talk with her again, and learn more about our family history. Never realized how much I would miss hearing those old stories. Seeing her frail little body, and remembering what a beautiful strong woman she was. Wondering how I am also going to end up if I live to be that age, I have no children to watch out for me.

When the time comes - I know that I will be grateful that I was able to care for her, but it's the process that is so difficult. Sometimes I wish the Lord would just take her home, as I know that she would not want to be like this. Then occasionally she surprises me, and out of the blue - says something that actually makes sense, like "I love you honey", or "thank you honey" when I feed her or wipe her mouth. It's then that I miss my "normal" mom so much, before this scourge of dementia stole her mind, and realize how much I will miss her when she's gone. No wonder she used to have this saying before her mind started to go... "Old age is cruel"..... Thanks for listening - I guess I needed to get this out.

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Bettyb21, do you need the dr referral first or just call hospice for a nurse evaluation directly?
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criteria for hospice has changed. Call them and ask for a nurse to come see your mom and do an evaluation. She can qualify for an aide for an hour a day, massage and other services. There is no charge for it. They will decide if she is appropriate for their services.
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Thanks, JoAnne. I will ask him about it. It sure would help us! She just had an MRI and her follow up today. Her brain was clear. All her memory issues, confusion, immobility, and continent issues are all due to radiation toxicity. He said it may plateau off or it will continue to worsen.
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Not anymore. The criteria has changed. Have your doctor set up an evaluation. I know people who were glad they did.
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I think hospice only helps if the dr believes you will die within 6 months. My moms issues are due to the brain surgery and whole brain radiation. She won't qualify unless the cancer comes back and she refuses treatment. At least that's how I understand it. Mom has already said that radiation ruined her quality of life and she will have no treatment if it comes back.
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You may want to look into Hospice now. Criteria changed a few years back. Things u pay for now, u may not have to pay for. You get aides that will watch your Mom while u run errands.
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Glad I'm not the only one that feels that way. My Mom is 87 and now living with me. I just can't see doing this long term. I've always been "it". I'm 65 and want to come and go, right now thats not possible. Until I can sell the house, there is no money for help. I do have an aide who bathes her 3x a week.
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You are not alone. My mom is only 73. Extremely healthy except for breast cancer that keeps coming back. She has required moderate care the past 12 years. Two years ago it metasizes to her brain. The last 2 of those she has been completely dependent on me. The whole brain radiation completely destroyed her. She can't walk, can't remember, is incontinent at times. My brother 30 minutes away will not help. At all. Ever. I am married and have 5 kids. My oldest graduated HS last year and I feel I missed his last year at home because all the care mom needed. I then have a 16 yo, 10 yo, and two 5 yo. I feel so resentful of the time I am losing with them. I feel depressed as well so then I feel guilty I don't give my best when I am home. I resent the time she takes a lot. And yes, this guilt is awful! She was a great mom. We did a lot together. I hate feeling so angry at the situation she has created. It's not like she chose it. I'm sure she hates it too. I feel awful because I wish the Lord would just take her home. Where she would be whole again. We are all believers so I know I will see her again. She is so lonely and I can't be there 24 hrs a day. I hate these thoughts and try to pray through them. Makes me feel like an awful, uncaring, and unChristian daughter. I'm tired. I want my life back. We can't get outside help either. Medicare won't pay for outside help. We can't do Medicaid due to home recovery. She lives right behind us in a granny house and her house is considered part of ours. We have always been the ones to pay the mortgage and taxed but her name was on the deed up to a year ago. They look 5 years back. I am just stuck. If she gets any worse I do not know what we will do. Wish I had some advice for you but I don't. Just know you are kit alone and your feelings are understood.
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Lynette, you are an inspiration to all have the ability to endure this. Unfortunately, for me, I can no longer. I went a different direction after she threatened to disown me - I took her up on the offer, and I have moved on. For me, it was the right decision - I have no one else to assist me with her stubbornness to allow anyone to assist her in her home or even consider the option of assisted living as she falls on a nearly daily basis in her home. She will not accept a walker or anything from me that would help her during her transition into Alzheimer's/Dementia. It was killing me to deal with this on a daily basis and I just let go... She is now dead to me... Everyone handles this differently, and I do applaud you and those on this website that have the endurance of Job to endure this adventure, I certainly never planned for...
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Dear MamaVic58

I am so glad that my post helped you in any way... Oh my gosh - you have the 2 of them!!!!

I can only say that the only One who is able to help me get thru this is the Lord. As Ma was starting to decline - I was filled with anger at losing her mentally, emotionally, and especially her declining physically, of course was harder on me. I didn't want to lose patience, but I was - it's an impossible situation - all the ways that you can think of, and so many emotions and real limitations on both parties involved.

I finally saw a positive difference in this when I just simply asked the Lord for help, after realizing I could NOT do this alone. I'm still in the process, and so often question whether I can go on another hour, but He is always there. I know He has a bigger purpose in mind.

God bless you Sweety - you have a double burden, but He will help you.

HUGS & PRAYERS
LynetteD
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Dearest Lynette, you are your mothers best friend and it's not your fault she isn't able to be the mother you knew growing up. She needs you, all of you as you did her when you were a baby. You are doing a great job so don't feel guilty, and it's ok to feel resentful, it's your minds way of protecting you. I have to say that when I read your post it was the first one I ever read here as I am new to this also but let me tell you something, while I read through I could have sworn I had written it word for word. I cried from the begining and still have tears in my eyes making it difficult to type. I haven't cried in years my dear I just haven't had the time since being the caregiver to both my parents, 90 and 92 years old. I love them so very much and like you my brothers live to far and can not help other than calling. Your story has inpired me and knowing that I am not alone is strength to lean on. My prayers are with you and I hope it gives you comfort knowing you are not alone in this journey.
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1overwhelmed - I understand what you are dealing with - that's for sure. My Ma was walking up to the point when she was hospitalized last summer for a UTI. The staff did not try & get her up at all, and after that stay over 10 days - she couldn't walk anymore. Up to that point before her hospitalization, I could walk her - with the help of her walker - into the bathroom for toileting, then a shower a couple of times a week. After the hospital stay - she lost the ability to walk, and I'm sure it was because they didn't bother to get her up.

I know the hospitals & nursing homes are often overwhelmed, and can't give individual attention as much as we would want for our loved ones. That's why I want Ma here with me, and as long as I can do it - I will. I don't think I am being a martyr - but I have thought long & hard whether she would be better off in a home. I just can't feel comfortable about it personally. For others who make that decision to have their loved ones in a facility - that's a personal decision and I would certainly never pass judgment on anyone who decided that.

I saw what happened to my Aunt, who was 98, had dementia & was in a nursing home, and they wouldn't even try to feed her. They would put a hamburg on a bun with French fries in front of her, and of course - she wouldn't eat. Then they just took it away, and that was when we were visiting her! Auntie stopped eating all together, and they allowed her to slowly starve to death under Hospice. There was nothing I could do, as she had 5 children responsible for her care.

At least - I can get Ma to eat pureed foods & liquids. This is very difficult for anyone to go thru, and make those difficult decisions, but - days like today - when Ma is alert & somewhat co-operative, I thank God that He allowed her to be here with me, in the moment.
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I know this time of handling dementia of a loved one is a very difficult time for a family and feelings of guilt are often very normal my prayers go out to your family. My family was going through the same situation and often guilt would creep into our daily thoughts as a family we decided to begin looking at different caregivers and found the company hallmark homecare which allowed us to hire direct caregivers and have the same caregiver come to our home each day. The decision alleviated some of the stress and guilty feelings that we were going through and allowed us to know for certain that mom was being taken care of. I would suggest reaching out to this company and seeing if they would be able to help allieviate some stresses and provide a much needed respite during this difficult time. The local representative I used was David D. Our family decision to begin using a caregiver allowed us to enjoy being with mom without many of the stresses of caregiving. I wish you the best of luck during this most difficult time.
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Thanks for all of your caring & gentle hugs & prayers. My Ma is bright eyed & bushy tailed this morning - I heard her chattering away when I woke up & went to check in on her. I put on all the lights & I have her birds in there to keep her company - cockatiels & parakeets & she "talks" to them throughout the day.& have the TV on as well. Hers is a sunny room - when it's not overcast and now it's almost springtime - so that is always a better time after these long cold winters.. God bless you all.
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How I relate to your post since I am in a similar situation with a 96 year old mother who has suffered from Arthritis for many years and recently fell and broke her hip. She was in the hospital, then rehab and now is at home with me since she is bed ridden and unable to take care of herself in any way. I am fortunate to be able to afford help since at 67 I could not do the lifting and provide the personal care she needs from one day to the other. She was always a strong independent woman and I think this may be a source of my resentment due to a bit of denial on my part that such a personality could now be so totally dependent on others and what I can provide. Im seeing the ineptitude of the therapist being provided who for two weeks has not made the slightest attempt to get her out of bed even though the hospital and rehab center had her up and taking baby steps after the surgery. Im angry at the system in place for the elderly and have a deep desire to get involved in improving the quality of care for the seniors who find themselves in this situation. This is a sad and difficult process and my life has come to a standstill but pray daily for strength and perseverence. At 96 and Im sensing she will never be ambulatory again. Im worried about the depletion of my resources to continue to provide the care she needs and I am saddened by her deterioration into this process. My heart goes out to all heroes who choose to keep and provide their parents at home rather than turning them over to a nursing home.
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Please dont feel resentful because you are doing the best you possibly can. Feel happy and cheerful when you are with her and also have bright lights and music playing. The objective is to give her moments of joy and sense pleasures to the extent possible. God bless you and mum
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I am in awe reading your post. I recently had to care for my mother, she lives in another country to where my husband and my family live so it was a strain leaving them and then leaving my mother when she got better. Yours however is continuous daily care... and love. I can't really begin to understand how that must take its toll on YOUR well being. Make sure you take time out for just "you " and don't feel guilty about that. I'm sure your mother would want to know her daughter is managing to carve out a life for herself as well. She wouldn't want it any other way. God Bless
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Wow, except for the alz/dementia part, I could have written your post. Moved mom here last year. 92, pretty healthy, but child like sometimes. Confused, and of course, I never know when she is spot on or in lala land. No disrespect intended. Love mom, we never had a relationship growing up, trying now? And the photographs! OMG, so many, and in bogs, boxes and I have no idea who most of them are. And her childhood, young adult stories, geez, never the same. Comprehension is intermittent too. I think I feel most guilty because I get upset, angry, resentful and KNOW none of us are promised tomorrow. I so want to enjoy however much time I have with her. I am with her 24/7. I too have great faith and am always asking God to help me reflect Him, love on my mama, not get upset. Such a challenge. Thanks for sharing, I still feel bad, but better... Stay the course, God won't leave us, He already promised that.
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Dear Lynette. I am mostly a reader of these posts and rarely respond, but i am a board certified geriatrician and also daughter of 2 aging parents, 82 and 94 years old. What you feel is NORMAL. You have done a beautiful job. You are human. And that is all you are. Human. "None of us as humans are privileged to understand the meaning of the universe" (quote from my 94 year old dad.) What I can offer is to encourage you to utilize hospice services and understand that hospice is not only for the last days or weeks of life. Hospice is for the last 6 MONTHS of life - and that none of us have a magic ball to determine when that 6 months occurs. Your mother could be there, as difficult as that is to believe or recognize. It doesn't mean that if your mother lived longer than 6 months, she would no longer be cared for by hospice. Hospice would reassess her and re-qualify her for their continued care. The biggest mistake doctors and families make is calling on hospice too late - when their loved one is in their last days or weeks of life on earth - instead of utilizing their services earlier on.
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Yes you are normal. I have been on this site for a little over a year (since mom, 81 this year) moved in. I am single but am in a relationship. Fortunately, for me, he is ok with me squeezing him in when I have time (he lives in the next town). I am fortunate that my mom has only mild dementia and is able to be on her own while I am at work. I just have to cook her meals, do her laundry, clean her bathroom etc. I know that one day I will be in your shoes and am not looking forward to it. I was the only one of her kids that promised not to put her in a nursing home. I told her, so long as I was physically able to care for her I would. And so I shall. I just hope this site is still around!! Bless you for being such a loving daughter.
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Lynette: This may be the most heart wrenching thing we ever do. Yes they are full of surprises and yes we are pulled in a multitude of different directions.
Yes only God knows. Keep Him as close as you can. In His hand and under His wing is where we need to be.
"Well done good and faithful servant" is what we all aspire to hear from Him in the end. You are doing it.
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Reading your honest words helped me connect with those same feelings that I've been suppressing for almost two years taking care of my 92 year old Dad. I so know how you feel. The daily frustration is real and self-hate a real possibility, however irrational. I have a brother who offers to "help out" but what he really intends to do is to take Dad and place him in a home and get access to his money and spend it all - leaving Dad finally with me, having used up all his money. He hovers over us like a vulture. So I do all the work myself and take on every responsibility. I know Dad appreciates it but it is heartbreaking to see him in the decline. I never know from one day to the next what "adventure" we'll be having. I too am single with no children. I found it interesting to read so many posts from women like myself in the same boat. None of us knows who will take care of us in the end. I wonder if there is a tendency for single women with no children to take on this responsibility. I guess it doesn't matter. What matters is that we try to stay as sane as we can, get good exercise like someone posted in a suggestion, and try to keep up our spirits. We have to give ourselves a pat on the back every day for doing what we are doing. It never feels like enough because we are looking everyday in the face of someone in pain and misery because of old age who we love so dearly that we are willing to give up just about everything to take care of. No wonder this responsibility makes us sad. I will suggest to you what I tell myself and that is to give yourself as much tender loving care and understanding as you do for the person you are caring for. I know there is precious little time for yourself, but just take a few minutes out each day to sit quietly and thank God for being alive and able to help. When there is nothing and no one anymore to depend on, we just have to trust that it will all work out somehow. Blessings on you!
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Regarding a couple of questions concerning Ma.. Re Hospice, she was evaluated a few weeks ago, and it was determined that she was not quite Hospice ready, as she was eating (although pureed foods) & liquids ok, and peeing & pooping ok, although incontinent. Also - Ma was smiling & responsive to the nurse who was out here. Her Dr was also out on a house call to see her in December, and if there are any pressing medical issues, I'm only a phone call away. I don't know why they don't deem it necessary to come more than 1-2 times weekly - but have said that if I need more visits - they would come out - but so far I have been able to change her & tend to her pressure sores, which seem to be healing up one by one, and I ordered some equipment that aid in her recovery, always with the oversight of the nurses, who agreed that the sores are healing up. I'm not sure what more could be done for her at this point, other than seeing that her needs are met & that she is comfortable & as happy as she can be given her state now. I've noticed that she is refusing food more & more, so I have to make more & more attempts at getting food down her. But - she must be getting enough - judging by what the amount of poop there is.

Only God knows how much time she has left, but she's fooled us before, when the Drs at the hospital thought she was only days away from the end, and that was last November. She continues to surprise all the time...
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Lynette, as you have already heard, your feelings about the situation are totally normal. You didn't ask for this, but I wonder why only nursing care 1-2 times/week? Is that a financial issue or by choice? I wonder about you taking care of yourself and your marriage. I don't mean to offend, I know your plate runnith over.
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Lynette you are doing a great job!

Yes it is very normal to feel the way you do. Talk to the Hospice folks in your area, and find out the services that they can provide. (Sounds like your mom probably meets the requirements for Hospice) The extra care givers that can come in may give you some time to get out of the house and recharge. I have started taking and teaching art classes at the local senior center. Low cost but time that I can just think about the project and not focus on mom or what I am not doing with my life. Friendly faces and light discussions whenever you stop by.

Find a support group for yourself - it really does help to download with other caregivers that understand where you are coming from. I have found one that meets twice a month and I hate to miss it!

Sometimes the promises we make are not made with understanding of what they really mean. Taking care of your mom may mean considering placement if she needs the round the clock attention that multiple people can give...hard decisions I know.

Remember this site is here...lots of folks who will listen. You are a good daughter!
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I think of the cruelest thing ( and they do not mean to be cruel, I know) is for a parent to make the kids promise to never put mother/dad into a NH. The kids are wracked with guilt if that is what they have to do at some point. My dad saw how hard it was to care for him at home and he purchased long term care ins for mother. Now she needs it, and the rest of my sibs won't agree to USING it. Oh well--sounds like you are doing a wonderful job. I, too, feel like I am doing a bad job at caring for mother, and I am only a once or twice a week respite care for my brother, with whom she lives. If it were up to me, she'd be in an ALF...but that's another story. I think we feel guilt because we cannot stop the downhill slide and we see the confusion in a once clear mind. AND you seem to be doing this all alone. Try and take time for yourself and try to come to terms that at some point you may HAVE to have her placed. I really don't think your father would be angry--the NH of our parent's memories are really sad, depressing places. Mother was in a Rehab/NH after hip surgery and she could have lived there very happily forever. It was lovely. we are fortunate to have extra insurance and a couple of my sibs are quite wealthy, so cost is not an issue...yet she'll never live in one. It sounds like you are amazing--I could NOT care for Mother that way. You are very blessed to have had a loving relationship with her. I have not had that, and it's too late to start now. I am truly amazed by people who can lovingly care for aging parents, esp when they have demetia----you are wonderful. Hugs to you!!
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It is simply a normal process and important to reach out for help and team with others on this journey.
My husband, family and caregivers all team with one another such a blessing. We are also transitioning of having Dad be placed with in a VA Home nearby as Dad has been progressing with his illness and his cognitive skills are simply not there in so many ways.

Our family is most definitely a family right out of the movie 50 first dates and we surely do our best with taking one day at a time and keeping laughter in it.

My husband and I both work outside the home still at present and truly are blessed with those who help and love on Dad and ourselves too.

Alzheimer's helpline 800-372-3900 or website www.alz.org is available 24/7 a wonderful resource in many ways.

Blessings and keep the faith. Hope you may watch the movie 50 first dates and smile like our family.
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Hi Lynette, I believe it is quite normal for you to love, resent and feel guilty over the caring of your mother. The love of who my mother-in-love was is what draws me back to caring for her. She was such a giver to me and my family, her church and her community. We all grow tired and weary and when this comes so does guilt and resentment...I always say it will be better in the morning. My husband and I have been caring for his 85 year old mother who is legally blind, a fall risk and suffers from dementia for over four years; as we watch her decline in health we keep adding things in our home to keep her safe. However, the dementia is a different story. She is aware of her situation and when she says my memories are just fading, I respond let me be your memories. I remind her of stories of her life. When resentment slivers into play, my husband and I take breaks by running errands or getting out with a friend. When guilt of seeing mother lying in her bed no longer wanting to do anything, I remind myself that being in a nursing home would be far worse and the loving environment that we provide her in the right solution for now. As long as I can provide a safe environment for her, we will care for her. Everyone has a tipping point - make sure you find someone you trust to love and encourage you and reinforce that your feelings are all natural; and find time to laugh. Praying for you...My husband and I have a latest saying....We are all in this together. God entrusted you with the privilege to care for a saintly woman. Keep Strong in your faith, read God's Word and let it run over you.
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Dear LynetteD
So sorry you're going through this, but when I read your story, it brought tears to my eyes, because I went through this with my mom. First, try to get some little breaks if you can because you need to take care of yourself too. Find some times when your mom is either sleeping, being bathed, or being fed. It's O.K. to leave for a little bit; you'd be surprised how much the little breaks help you to be re-charged! I would also tell you to enjoy those little moments when she is lucid, even for just a moment. My mom will be gone 3 years this August, and I still miss her. I hate that Dementia stole her from me (even when she was alive, there were days when I didn't even recognize her - my own mom!). Keep up the faith, and I hope things go better for you. It's not easy caring for her and your husband as well. Good luck with all of this and God bless you and your family.
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Lynette D, you are feeling this way because you are a wonderful, loving human being. But, only a human being and of course it is absolutely normal for you to have these emotions. I too take care of my chronically ill 77 yr old mother, with a host of medical conditions and now early stages of dementia. I have two siblings but they do not help me at all, even when I have asked and cried for help. I do have two beautiful grown children but I would not want them to go through what I have in dealing with my mother. Just remember that we caregivers are doing the BEST that we can on that given day. If you are lucky find a local support group but, just know that we too here are more than willing to hear you out!! Hugs and blessings.
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