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
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.
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.
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.
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?
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.
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.
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.
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!