I'm only 17 and Dad has Lewy Body dementia and is being put in nursing home. Any advice?

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!

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!

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.

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.

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.

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.

"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.

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. :)

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.

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.