Earlier today at my therpist appointment I became very confused. She began talking to my wife about having me committed somewhere for my own safety and for my family's safety. She says that she is seeing rapid deterioration in my condition.

I feel very panicky about this. I don't want to be committed to a state facility against my will. Those places are worse than hell. I'd rather die than go there.

I need to stay focused and not panic. I've heard so many horror stories about the State Hospital. Does anyone have experience with such a place?

What are long term care facilities like? As a pastor, I've been in many nursing homes, and I wouldn't want to live in any of them. The pee smell alone is enough to make me want to cry. And the desperation and isolation, being treated like an invalid, or even being physically abused, I can't stand the thought of it. The food, it's horrible. My wife always hated to go with me to visit the nursing homes. She won't want to come see me. And what about my kids? I want to see them every day and help with their homework and be there for them. I don't want them to come aroud for their obligatory weekly visit on Sunday afternoons -- I want to be a part of their lives forever.

I'm young still. I don't want to live my life surrounded by elderly people. I'm sorry if that sounds bad, but it's just being raw about how I feel. I don't want to watch TV all day or play dominoes. And I definitely don't want to live behind a locked door where I can't leave on my own accord. I don't want any of that.

I realize I sound overly dramatic, but I feel like my world is collapsing. I'm reaching for faith but it is hard to find it at this moment.

The therapist took my wife aside to talk with her privately. What can I do? I don't want anyone making a decision about my life or about where I am going to live or how I spend my days without my consent.

Randy

Randy,
I can't imagine anything harder for you. When I read your letter I heard what my dad must have been feeling and it must have been very scary. All I could advise is remember that your wife and your therapist are not going to do something to hurt you. Your wife loves you but there may come a time when you will have to live some place other than with your children. My father is in an assisted living facility for people with dementia. It is not a state run facility, it is not smelly it is not a prison. It is true he can't leave when he wants but the grounds are lovely and he is free to roam them anytime day or night. Please ask your wife to check to see if a place like that is available in your area. Don't despair and trust that people are trying to help - she is afraid too, she doesn't want to lose you either. Hang in there. My prayers are with you.

Kani

Dear Randy,
I am so sorry that you are panicked and rightly so but you must trust in the people who love you to do the right thing and reach out to your faith the best you can.

Randy -- You said yourself that you were somewhat confused this morning. It is possible you misheard, misunderstood or imagined the conversation with therapist. Have you and your wife talked about your wishes and options? If not, do so during your next lucid spell. Meanwhile, have faith in the woman you chose to marry and bear your children -- she will do everything in her power to care for you in the way you wish to be cared for and in the interest of what you would want for your children. Relax, take some deep breaths, talk to your wife, talk to your therapist (will you trust this therapist?), hold your children, and ask your wife to be sure your medical doctors are providing as much pharmaceutical support as possible to keep you and your family safe. Not to sound trite, but try to let go and let God. Peace!

Dear Randy,

First let me give you a big *HUG*.... I am so sorry for all you are going through.

I am no expert in LBD, but I do know that paranoia plays a big role in some that suffer with this disease. Maybe that is what has you thinking this way.

In my mother's case she is very paranoid about lots of things, people, etc.

We can all hope and pray that tomorrow will bring happier thoughts.

Let God do the worrying, He makes no mistakes....

Randy,

Were this all to be happening to me I'm sure it would be very upsetting.

My father (clinical DX of PSP) has lived in 3 ALFs, one SNF, and now one hospital for those on ventilators. At times there can be odors of urine or stool emanating from any given room but this is always resolved as quickly as possible. Personally it would not bother me to live in any of the ALFs or the SNF. It would bother me to live in the hospital but I don't think it bothers Dad one whit. He's on a ventilator and never leaves his room so he doesn't know what a different world there is in the hallway and other rooms. But after a month of seeing screaming children, babies on vents and feeding tubes, and see deformed people trying to communicate despite the trachs, I have gotten used to it. And I'm so happy that there is some place for all these people to live.

I had a good friend who was committed to a state mental facility in CA. I have visited him in two different locked-down facilities. (He is still a friend but he has no idea who I am.) While I was scared as hell to enter each one, I found nothing objectionable with either. Again, I decided I was happy that there is some place for him to live. He was bipolar and not taking his meds, and also developed AD. He became too difficult for family to care for.

I can tell you that before each move we made my father take and before my friend was committed, I was scared and sick with worry. But each time, everything worked out and I felt foolish for being scared of the unknown.

I don't know if this helps or not. I guess when it comes down to it, you must trust your wife to do the right thing. Maybe you need to have an intervention meeting for yourself and invite your wife, other close family and friends.

Robin

Randy,

If you are going through sudden changes or decline, perhaps there is something else going on (other than LBD) that is causing it.

For example, an underlying infection causes rapid deterioration in mental state and abilities. Sometimes, it's a change in medication that you and your wife wouldn't suspect could be the culprit. Or a medication change that seemed not to be a problem at the time, but over time has accumulated in your system and is now an issue.

Perhaps a consultation with a geriatric psychiatrist would be helpful. Sometimes that is best done during a short term, in-patient setting so that medications can be stopped and later re-started one by one in order to identify the problem.

Hang on tight, we're praying for you!
Angela

Dear Randy,
I am so sorry for the fear you are experiencing. My husband is 58 and was diagnosed two years ago with LBD. We are also Christian and although we do not understand all the reasons for what is happening, we put our trust in God. We also talked about the future. My husband made it very clear to me that he did not want me ever to have to change his pants, or put me in any kind of harms way. With his disease fluctuating so much, it can be quite frightening at times. He always said that if he ever gets to that stage, please put him somewhere safe. That decision came about 3 weeks ago. It was the most difficult and painful decision I have ever had to make. He is oblivious at this point as to where he is. I miss him so much. We still have kids at home too. This place is NOT a state hospital. It is really quite nice. He is doing well and we are all trying to adjust. He is safe and well cared for. Remember..one day at a time.

How old are you Randy?? This sounds so familiar!!! My husband is young and one time he was so frightened that someone was going to "stick him some place"...He wasn't too far from wrong.... When his meds are off whack and hallucinations run rampant, if they become threatening, I feel scared and he feels scared too.... that the hallucinations are going to get him booted out of the house and into ONE OF THOSE PLACES!!!!! Ron was admitted to the hospital for a couple of days forthe doctor's to work with his meds a bit and to give me a rest with the worry of a guy running around the house at night thinking intruders are standing over the bed... WELL, FIRST OFF, BE COMPLETELY CONFIDENT IN YOUR NEUROLOGIST. Not all neurologists are good at balancing meds and a neuropsychiatrist would help, too. Maybe your meds need to be "tweeked". I know I am brand new to this website so I don't know how your meds are handled and I am sure you are in good medical care but L>B>D> is a tough one medically!!!!! Sometimes my spouse and I both feel just worn out because we don't know "what is causing what" in the symptoms department. You ain't the only one in this craziness - remember that!! Cheryl

Cheryl,

I am 41 years old. I feel very much like you have described. However, for the most part, my hallucinations are not threatening at all. I'm fortunate to have 'happy' hallucinations, at least so far.

But I do get delusional sometimes. I've had the feeling that people were trying to invade the house. And I've had the idea that people were listening in through our computers and planning to invade, so I insisted that all the computers in the house remain turned off. Those times are pretty rare for me, though.

I don't think I've had any of the kinds of capgrass (sp?) experiences I've read about, but for a while I was concerned that my wife was plotting to have me committed to the state hospital (I wrote an embarrassing post that hinted at that).

Randy

Randy, you may have given me the courage to get Ron on this website... We don't discuss LBD much... Ron hasn't actually been formally diagnosed with it.... But I am pretty sure the doctor's believe he has LBD. I have been in denial and trying to shield Ron from that diagnosis. Maybe that isn't such a good idea. Thanks, Cheryl

First let me say that I can't believe you have this at such a young age. How very sad, my heart breaks for you. It's so hard dealing with this with my Mom and feeling like she is getting so ripped off having this horrid disease at such a young age and she's 68! I can't believe there are so many younger people afflicted with it.

Two weeks ago we had to put my Mom in a home. She has the Capgras along with "LBD with variants" and parkonsonian symptoms as well (not sure if that's the correct usage). It had gotten to the point where she thought my Dad was an imposter or actually several imposters. The last fateful day she attacked him and it wasn't the first time, but the wost. We had to do something. The doc told us that my Dad was in danger because if my Mom woke to find a strange man in her bed she could hurt him. 2 of his female patients had stabbed their husbands while they slept. On top of that her care was becoming such that my Dad could not do it anymore. He is 75, in good health but his blood pressure was going through the roof from the stress and it was just to much for him. We tried the daycare route as well and she fought it. Getting her dressed and out the door was so hard because she would fight it the whole way. I have 3 sisters and a brother. We did what we could to help but we all have children, jobs and other responsibilites that we could no longer neglect. We had to do what was best for my Mom and so we put her in the home. Let me say that it was the hardest decision we could ever make. Everyday we talk to each other and cry and cry. The guilt consumes us. I want to keep her home and take care of her but the reality is I'm not equipped to do that financially or emotionally and how fair would that be to my husband and children(I have 5, 4 still at home).
The home my mom is in is beautiful and does not smell like pee. My sister is a nurse there and has been for over 12 years. We are lucky, Mom is getting wonderful care in a wonderful facility. Still it does not stop us from every single day questioning if we've done the right thing. Trust me Randy if you ever have to go in a facility it will not be something that your family does without agonizing over it first. Last night when I left my Mom I was in the same state I am always in when I leave...the pain in my heart is so real that it can bring me to my knees. I love my Mom with my whole heart and as much as I hate where she is I know that it is absolutely the best thing for her.

It makes it all the harder because she always said she never wanted to go to a home. I will never ever put my family in that position. They can stick me in a corner somewhere and let me go. I never want them to feel the guilt that I feel when the reality is is that it is out of my hands. I can't imagine being in your postion Randy, again, my heart breaks for you and your family.

Patty

what is "capgrass"??????

Cheryl,

Capgras's syndrome is a rare disorder in which a person holds a delusional belief that an acquaintance, usually a spouse or other close family member, has been replaced by an identical looking impostor.

My mother has LBD and from the very beginning she thought my dad was someone else. It caused a BIG problem, she became enraged by him.
She has been DXed for about 8 mos and still has problems with my dad. She thinks there are 3 and now 4 of him that switch places with each other. Since she is taking Seroquel she deals with it better and is calmer about it but still insists there are 4 of him. She has names for each one and describes them to me. 1 is short, 1 is tall, 1 is fat, 1 is sassy etc. She has never let go of that delusion.

She has hallucinations ALL the time. Her home is full of people. Also she thinks she is not in her home, that her home is somewhere else.
I think the Seroquel has helped her deal with everything in a calmer state.
Before she was hysterical about it all.

Randy,

Here is a tiny seed of an idea.
1. Print out your post with the replies.
2. Get a large pad of paper and a bold Sharpie
3. Pick a quiet, lucid time to sit down and show the post to your wife.
4. Ask her to talk to you honestly about what is happening.
5. IN YOUR OWN HANDWRITING, as LARGE as possible, make yourself some notes that you will understand, like: No one is trying to commit me.
STAY CALM. Take a warm shower when fear starts. PRAY!
6. Put them on the refrigerator or some place where you can't miss them.
7. When you are afraid, your own notes in your own handwriting may help you get back to a calm place more quickly.

You are such a blessing to me. I will keep you in my prayers.