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I'm having a very very hard time coping with this. My grandparents adopted me when I was a baby because my biological parents were not fit to raise me. I've called my grandparents mom and dad my entire life. My dad is 70 years old and a few months ago he started having hallucinations and that alarmed me so I got him medical attention. He was taken to the state university where they made a decision he can't come home. There has been so many warning signs over the past few years that I didn't think anything of. I feel guilty that I didn't look into them sooner. Like I said before, I'm only 17 years old and I'm dealing with what 40 year olds deal with. He is going to miss so many important things in my life. Graduation, marriage, kids. It breaks my heart and I believe I'm becoming depressed. I constantly cry and am scared. He doesn't understand that he can't come home and that breaks my heart even more. He keeps telling me he wants to come home. I need help on getting through this horrible time and I feel completely lost. Any advice helps

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Juderem, who told you this? Was it the person who is in charge of administering your mother's estate and now your father's affairs? Who is that person?

At 17 you are in danger of falling between two stools - you're not obviously a dependant, but you're not yet actually an adult either. But unless you're living on the moon there will be sources of advice and support you can access. I'm so sorry this has happened and is going on for you and your family.
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Hi Daddy'sgirl, you've had lots of good advice and you are doing really well.
Today is my 69th birthday and Dec 28th 2015 I was told I have Lewy Body dementia. I'm widowed and I look after my BIL who has a different kind of dementia.
Like you (despite the fact I'm so old :~) I was scared and desperately sad.
When I talked to my best friend about it, we started between us to piece together the symptoms and we found that I've had this for more than 10 years, that's even when my husband was alive. We didn't have any idea until 6 months ago when I really did start acting oddly rather than my usual slightly crazy :~) so don't feel bad the symptoms aren't obvious, please let your Mum know that too, 'cos I bet she's blaming herself a lot.
I know it's hard and scary when he's shaking and acting strangely, all I can tell you from when it happens to me is a) it's actually worse if I try to stop it, if I let it happen I'm very, very tired after but it doesn't hurt me. I hope this helps.
As has been said, make memories now, because you can. We none of us know what will happen or when, so don't write Dad off. Even if the very worst happens and Dad's body can not be with you for the big events in life, he will be with you, because he is always with you in your heart and memory.
When I'm 60 next year, a big birthday my darling husband will be there in my heart, just as he was this year.
Your worried about him seeing his hallucinations all the time, in my experience they are not around all the time, they come and go. Lots of luck to you and Mum, maybe she could read some of the things here if she's finding it hard to accept help.
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Ive been on my own since i was 14. Im 60 now and caring for the mother who abandoned me. Certainly, my story is different but i suffered as a teen watching dad die from PTSD and then i was abandoned by mom. But, i made a choice after 4 years of depression and struggling to understand "why" that i just didn't want to be sad anymore and i didnt want to be a "statistic" -- that when "A" happens, then "B" follows. Your "A" is dad and his dimentia and your "B" is you and how will you rise above all of this? What would your dad want for you, in this life? The hardest lesson in life is "life is not fair". The second hardest "You have zero control over another and no control over their life". All you have is YOU. I know you want a magical answer- we all do. But I tell my children that they are here to be their best and learning to let go of what we cannot change will be the number one greatest asset. If you sink into depression-- you will be zero good for dad so why not focus on becoming awesome and who knows-- maybe in time you will be in a position to help him, love him, and be compassion? You will trade all that is "possible" for letting this beat you. You have what it takes-- dig deep. If i survived as a 14 year old and went on to educate myself and now care for the very woman who abandoned me-- so can you.
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I'm 17, my mom died suddenly 3 months ago. My dad now has to live in a nursing home. Our home has to be sold, I am living with friends, but am told I will have to support myself. How can this be true??
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daddysgirl96, It is not common in Lewy Body Dementia for the person to stop recognizing loved ones. Dad will probably always know you, and that does help! The symptoms that you are seeing on a very bad day may always be present to some degree on very bad days, but there is hope that the right combination of drugs can help reduce some of those symptoms.
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I went to visit him today. I didn't know what to expect since one day he's doing well and the next day he is very lost. I ended up catching him on a very "bad" day, I felt. I'm not sure if this is what he's been like the entire time or this was just one of his days. He was seeing a lot of things and misinterpreting objects for something completely different. He did know who I was though so that helped a lot. It was very very hard seeing him like I've never seen him before. Lots of shaking, blank stares, sentences that made no sense, and limp arms, legs, and neck. It does give me some closure though. I know where he is staying is a good place and they can monitor him constantly. Even in his backwards state of reality, he is still thinking about cars! He would talk about motors (even if sometimes it didn't make sense). It made me chuckle at the fact he still loves hearing and talking about motors crank. That man sure does have a passion! I really feel if I didn't get on this website and hear what you all had to say, I wouldn't of been able to go see him. Im getting stronger every day. Thank you all so so so much. :)
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"Chattels" are a tricky area, DG. The bits and pieces we collect, how much they're worth, what they mean to us and our loved ones… The law is terribly bad at handling the messy detail of life.

I think what the lawyer meant by "he's not allowed to do that" is probably that, because your father no longer has legal capacity, he can't draw up a letter of wishes, make a will, or grant power of attorney. In other words, decisions about giving his possessions away are out of his hands.

Don't get bogged down in this, you've got much more important things to concentrate on. Number one: not letting your own life and education get overwhelmed.

Leave the bulk of the administration to your mother. She won't be enjoying the experience, but it does sound as if she's got it under control. Be there to help and support her.

In terms of items that have real sentimental value and meaning to you, set them to one side. If they could be of significant monetary value, then the honest thing to do is get them formally assessed and record them among your father's assets. I think what more generally happens with personal possessions is that they're looked over, summed up, and a notional figure is put on their value. It's not likely that anyone is going to come after you if you've kept your dad's tools (depending on what they are of course: if they actually amount to "plant" with a significant capital value it will be otherwise); but the safe way is "if in doubt, check."

It's very natural to treasure your parents' possessions. When you feel you're losing someone, everything connected with him is precious. But if you hang on to all of it it will be overwhelming. Be selective, and then mentally just let the rest go.
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Well my mom went to the attorney so I wasn't there. But my entire life he has said all the tools and guns are mine if something were to happen to him. Im almost sure he never made a will or anything of that sort. I'm not exactly sure of everything that was said when she talked to the lawyer, but she said she mentioned that all of his tools and guns are to go to me. But apparently the lawyer has to know about every little thing he owns.. As far as money goes, we can sell the trucks and boat and a lot of other things to help with his nursing home expenses. We definitely do not want to sell the tools. They are very valuable to me as are the guns. My mom told me to take everything I want, now. She said get it all so they won't even know about it. I'm just scared they're going to take what they want and sell it without asking if it means anything to me. Dad definetly wants the tools to go to me. He would be VERY upset knowing that the lawyer is wanting to know about it. Like I said, there are many other ways we can afford his nursing home care, so I'm not understanding why they need to know about the small things that we are not wanting to ever sell
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This is a complicated situation and you have good advice from others, so I’m only going to address the legal aspect.

Not only does the attorney need to generally inventory assets for Medicaid consideration, as Maggie wrote, but also to determine how best to preserve them and plan for your father’s heirs to receive them, as well as how to best handle the estate planning issues. He’s probably considering whether a will or a trust would be better.

If your father has stocks, bonds, IRAs, the attorney would have to consider how best to hold and transfer those, i.e., which might be held by a trust and which should not be.

His guns, for example, could be considered collectibles and might be quite valuable. That value may affect the monetary value of your father’s assets.

I don’t understand your statement that the attorney said “he isn’t allowed to do that”. Was he referring to leaving everything to you, i.e., that your father can’t do that? Or was he referring to something else. Could you please clarify?
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I just want to say thank you so much to everyone who has replyed to my question. It means a lot to me to know I'm not alone on this. Every reply makes me feel stronger and helps me understand how I feel and how to deal with things right now.. Today my mom went to visit him in the hospital. I couldn't go because I was at work all day. But I sent a photo of my dog (who he is CRAZY about) and i with my mom to give to him. He was moved to a stricter part of the hospital and she wasn't even allowed to bring anything through the doors. So he never got to see the picture. That broke my heart. Also, he introduced my mom as "his mom" to everyone. Mom just replied, "no, I'm Linda." The second time he did it his nurse asked, "well who is Linda?" He goes, "oh! That's my ex wife!" But mom said he looked at her after and she thought he still was convinced she was his mom. This really upsets me but at the same time makes me happy because he knew that my mom is his ex wife. He still knows who I am though and I hope that doesn't change for a very very long time. He is on some medicine that helps him not be cranky and agitated and I guess that is helping his mood a lot. Mom said he was very happy today. I'm so grateful he's happy, I just wish medicine wasn't required for him to be this happy. He is still having major issues with reality. He has "people" he talks to among a lot of other things he sees. I haven't completely accepted the fact that all this is happening, but I have came to terms with it. I know there's nothing I can do to make this awful disease go away, but as long as he is happy I feel like I have done the best thing I could do.
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My heart feels your sadness . I urge you to think about your feelings regarding your father. If there are things you need to say, say them with love, but say them. If there are things you need to hear from him...tell him that you do and why. If he is past being able to communicate to you formally, then write it in a letter to him. Get it down on paper and in some ways, get it out. Realize that you were born perfect, at the perfect time, to the perfect parents and raised by perfect grandparents.

It's not your responsibility to care for your father. You have done what you should have to keep him safe. You are a child and should continue on that path. They will take care of him. If and when you feel you want to visit, do it because you want to. (don't do it out of guilt) If it makes you feel bad, don't do it. It's a difficult disease and you will want some counseling from school, so ask for it. Stay healthy yourself. Don't get stressed by this. It's life, even when it's tough, try to realize it happens to all of us in one way or another. Everyone makes it through it. Talk to everyone about your thoughts, get into all the support groups you can. I'll be praying for you:) Keep living, your life can't be put on hold.
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You are having a very hard time indeed. And what's happening to your poor Dad, and your poor mother, and you, is not helped by what has gone before.

When I saw your headline post, I thought "oh no, poor girl!" but I also thought I had an experience to offer you as a hopeful story. The husband of a close friend of mine suffered from this horrible disease, and their children, then in their late teens and early twenties, did so much to help their parents. But in your situation, too many people have gone missing. You must feel terribly alone. It's heart-breaking.

I'm worried by your worry about the legal procedures your mother's working on. It sounds as though you and she are being pulled apart by what's happening to your father? But you really, really need one another; and your father needs both of you. If she is still sore and upset about his behaviour over recent years, try to help her understand what this disease does to people; try not to blame her for how she's feeling. If she seems to you to be being hard-nosed, try to remember that however sad it is, practical life still intrudes and has to be dealt with.

Before I forget, I want to give you a huge pat on the back for the best decision you ever made: acting on your worries about your father when you realised he was ill. You smart cookie! Whatever else happens, know that if you hadn't done that things could have been so much worse. This was not a small decision to make, either: many people much older than you are too uncertain of their own judgment to act on it. WELL DONE.

What's happening to your dad now is frightening for everyone. I agree with Jeanne that the more you understand about the disease the better you'll be able to cope. But in a way, it's your mother who needs your help more. Your father has lots of people involved in his care. If she's refusing help from others, then she's only got you. I'm not suggesting it's ok for her to lean too hard on you - you mustn't put your life on hold - but as things are for now it's only you she'll let in, so it's only you who can persuade her to accept more support. She must be in a whirlwind of emotions at the moment. Do you think she might be pretending otherwise because she still wants to protect you?

Don't, by the way, do the same thing to her. Don't stop talking to her about how you feel about your father, and about how sad and fearful you're feeling right now. You've every right to express what's going on in your mind, plus you just might set her a good example.

Also, school. Tell your teachers what is going on. Use every resource your school offers in terms of counselling and support, and find out whether it's possible to defer tests and assignments if you need to take periods of time off. They will help, you only have to ask.
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I'm very sorry for your heartbreaking plight, DaddysGirl. First, an answer to your practical question, the easy one. The need an inventory of all of his personal belongings because he can't afford to pay for his own nursing home care, he needs it, and - before Medicaid will pay his way - they want everything of value sold to help pay his bills. Nursing homes are very expensive.

Next, I think your mom (who's divorced from him, if I understand you correctly) is a really straight arrow with a moral compass right on target. Good that she is stepping up to watch after his best interests at this time.

Finally, about your feelings. The hard part. It's all fresh right now; things are happening very quickly, and you haven't had time to process them. You'll begin to get things in perspective as time goes by. It won't be easy. Take great comfort in knowing that your dad won't be living alone anymore...that he'll be well taken care of...that you can visit to make his days brighter...and live your life to make him proud.

LBD can go on for years with people having good days and bad. Maybe he WILL go to your wedding. Don't count him 100% out just now.

Stay strong.
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I'm still in school and I live with my mom. My mom and dad decided to get a divorce last year. All they did was fight and she was convinced he did things just to make her mad.. Now she knows all the things that have happened weren't just him deciding to be mean. It was dementia. I can tell its killing her but she refuses to get help from anyone. I'm afraid this is going to take a toll on her worse than it is on me. And he is also wanting to go home. He is still in the hospital right now and the social worker there is trying to find him a nursing home close to me. He doesn't understand he's going to a nursing home. When I talked to him on the phone he said he's coming home tomorrow. I didn't know what to say and I knew I had to hold it together because it was upset him hearing me cry so I didn't say anything. He is also having some problems with thinking his dog is dead. When I call he asks if she's okay. I say yeah she's great! And he says oh I thought they killed her by now. (I don't know who they is, but he has seen quite a few "people" at his house.) Also, I don't understand the whole legal situation. My mom went to a lawyer to get started on being power of attorney. He has two trucks and a boat registered in his name. I understand the lawyer would need to know about those, but why does he need to know of personal items? My dad was a mechanic his entire life and has many things that can be useful to me, as I follow in his footsteps. He also loved hunting and fishing so he has guns and fishing poles. The lawyer said he needs to know about all that stuff. My entire life my dad has said if something were to happen to him, everything is mine. The lawyer said he isn't allowed to do that. I don't understand why theyre doing this, its making it all so much harder.
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Daddysgirl96, first let me offer you a hug! This is a very hard blow!

Where is your grandmother/Mom? Where are you living? Are your needs being met? Are you in school? Tell us a little about yourself and your situation.

I am so sorry that Dad has dementia. Don't feel bad that you missed early symptoms. That is very common. Be proud of yourself for getting him medical attention at all.

My husband had Lewy Body Dementia for 10 years. It is a strange disease in that cognitive abilities fluctuate so much. One day the person seems perfectly normal and the next day he can't figure out how to get into bed. It is a roller coaster. When you visit Dad you'll be able to judge whether he is having a good day or not, and aim your own conversation accordingly.

Lewy Body is a little different from most dementia in that the symptoms often respond well to treatment. It varies a lot from one person to another, but with good care Dad's quality of life can be maintained. You can be a part of that good care. Visit him often. Learn about his disease so that you can interact with him appropriately. Don't make this the center of your life. Go forward with living your life. Sharing it with him when you visit will be important to both of you.

My husband in constantly wanted to go home in the early stages. He would even pack a little bag and stand by the door waiting to leave. The odd part is that he was at home! Many dementia patients want to "go home" no matter where they are, including in their homes. Some experts think this is a longing to go back to when things were normal -- that "home" is where I don't have dementia. Realize that this is part of his disease, and he would not necessarily be happier if he left the care center. You might say something like, "I'll look into that for you, Dad. For now, lets walk out to the garden." Acknowledge his statement and try to divert his attention.

Crying and being scared sound very normal reactions to me. And depression is not uncommon. I urge you to get some counseling. This isn't to "fix" anything "wrong" with you -- it is to help you cope with something very "wrong" in your life. The stronger and more stable you are, the better able you'll be to contribute to Dad's care, and the more able you'll be to move forward with your life.

Keep in touch here. We understand, and we do care!
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DG, call and talk to the social worker at the nursing home your dad is in. They will have all sorts of resources to help you feel with this. You are at such a young age this must be terribly difficult for you. Your Dad is being well taken care of and would want you to live your life, find your dreams,and make them happen!
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I'm so sorry you have to go through this at an age where so many "firsts" happen. It's natural to cry and be scared we all were there once seeing our loved ones go through this. Please realize you are not alone and there's support both online and perhaps in your community that can most certainly help you. Reach out and finding a support network will be most helpful in this situation, check out hospitals, community centres to find a support site near you. There's also the resources here on this site that could also help. Although future memories with him will be sad and not the same realize no one can ever take them away from you and make them the best memories you will have. ((hugs)) I find this discussion site very helpful as well when I first realized my father had dementia. It's a long hard battle, but memories are there to be created and held forever. Continue making them.
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