I Never Experienced

I Never Experienced

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a day like today....
My wife went off the deep end mentally.
Her psychosis (hallucinations) of the past weeks have been getting progressively worse.

YES (I AM SCREAMING) SHE IS UNDER THE CARE OF A MOVEMENT DISORDER THERAPIST WITH M.D. STATUS WORKING HAND IN HAND WITH MY WIFE'S PD NEUROLOGIST (OF THE HIGHEST ORDER) AND THEY LET THIS GET TOTALLY OUT OF CONTROL. THE THERAPIST HAS BEEN TRYING TO SPEAK TO THE NEURO SINCE FRIDAY AND UP TO TODAY NO LUCK... WHAT’S' GOING ON >?????????????? THIS NEURO HAS BEEN MY WIFE'S DOC FOR 15 YEARS!!!!!!!!!!

On my return Friday from a short biz trip our live in companion of 3 YEARS immediately informed me that she was leaving (say QUITTING) in the morning.

She apologized to me because she knew how much I needed her.... BUT the verbal abuse of the past weeks was just too much and she herself almost had a driving accident during a surprise verbal attack in the car.

Today started with a screaming attack in her sleep at 0500 I thought the police would be called by neighbors. Although she was sleeping and eventually woke up I had trouble to quiet her.

Then all day she saw "them" (our live in and ??) in every corner of the house. In every nook and drawer...like ghosts they were floating.

I was screamed at for letting them in and having an affair with her. The next moment My wife was asking for her help to get dressed. The next moment My wife was giving me a divorce so I could marry her. The next moment My wife was cursing me (with all the words) for leaving her and flying to Hong Kong with my girlfriend... and on and on.... I only told her that it was the medicines causing this and I promised to get her well....

About 5 P.M. I heard her screaming...she was in the back yard screaming at the trees and then telling me that she thought they were me and "them"

BUT in a moment she was lucid again and crying that "she is seeing things and she is going crazy because she realized it was a tree"

Then tonight was the final episode...I heard her scream from the bedroom and when I ran upstairs she was hysterical because "all her clothes had our son's name in them" and "she was afraid he would find out."

I finally calmed her down (I don’t know how except with a full body hug) and she SNAPPED OUT OF IT saying "how stupid she felt"

She is on a dosage of 800mg of Seroquil PLUS now some 200 clozoril. ITS GETTING WORSE....

I CANT BELIEVE IT!!!!!!!!!!!!!!!!!!
I CANT BELIEVE WHAT HAPPENED TO HER!!!!!!!!!!

I HOPE SHE IS PUT INTO THE HOSPITAL TOMORROW BECAUSE IM AFRAID SHE MIGHT DO SOMETHING....

Through it all, the saving grace is that her PD symptoms have been minimal at worst. I always thought they would be aggravated by stress but thank G.d this was not the case or I would have been hospitalized during today.

I don’t know what anyone can say but I had to "warn" you that this happened.

Could she be OVER DOSED?? I thought these meds were supposed to reduce it????

I hope I make it thought the night...
thanks my CARE family for listening...

Now I know how PDHUSBAND felt when I read CANT STAY CANT LEAVE.

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I don't know who else is up now so I'll take a few minutes. My wife is not this bad, just some screaming in her sleep.

May God Bless both of you and may your night be peaceful. Then tomorrow let's hope the BIG BOYS get the MEDS straight and evict the "THEMS" from your life forever.

With love and best wishes from two former NJ'ites.

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Argh, what a day or actually weeks you've been having. We've been there and done that too. My only suggestion is to second your idea about admitting her to the hospital while they revise the meds. We've had to do that a couple times and it was clearly the best choice for my mom. We live near a University hospital and she went into the psychiatric floor. Yes, it is very hard, but it was the right place. Things are much, much better now and it is about 5 years later. We still have some of the delusions etc., but so far nothing as bad as it was during that period. It was a problem with the meds. From my perspective, the mental delusions, paranoia, etc. that sometimes come with this disease are the most painful to watch happen.

God bless you and your wife as you face this new challenge.

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I can only echo what has been said and give my best wishes to you and your wife. My wife has gone through similar but not nearly so extreme "adventures." Screaming was never part of her situation but there were a couple of months in which she thought that I was Tommy's (me) friend that he sent to look after her while I was away. She is under the care of a movement disorder specialist and a psychiatrist. The MDO only orders a minimum ( 25/100 three times a day) of Sinemet. The psychiatrist has ordered 175 mg Seroquel (25 mg in morning; 150 mg at night and 0.5 mg of Klonopin divided between morning and bed time.

It was only after she was hospitalized under the psychiatrist’s care that the medications were adjusted to where her hallucinations were minimized (not done away with).

God bless and aid you.

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My heart goes out to and your wife. My husband has had moments of confusion and has run the gambit on this disease but never like your wife. The last time he became a different person he was hospitalized until the drugs could be controlled more. I really hope that you get some help for her and for you. I'm keeping you in my prayers.

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I'm a new member of the Care family. I've seen my mom hallucinate and/or become irrational (but not to your wife's extent) as the result not only of meds, but also (a) a urinary tract infection and (b) an electrolyte imbalance. In the case of the electrolyte problem (which an emergency nurse diagnosed, after the doctor wrote it off to flu), it was a sodium deficiency. When the imbalance was adjusted (took 3-4 days in the hospital) things improved significantly.

Mainly, though, I just want to express my concern. I can see already how generous and helpful the members of this group are.

I wish you and your wife the best, and I hope you can get some rest.

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The Seroquel sounds like way too much. I can only echo what others have said that a hospitalized drug holiday in the psych ward is probably what's needed with a slow restart of the same drugs or different ones. We had to do this with my husband and he certainly improved for a long time. It's been 4 years since he went in and the docs have kept him on minimum drugs as he reacts so badly.

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My heart breaks for you and your wife. I hope you'll call the neuro today and ask him to admit her to the hospital, as others have suggested. Certainly the meds must be playing the major role in this, and given the extent of her problems (and thus yours), it sounds as if the safest place to evaluate and adjust her meds is in the hospital. BTW, it has been my experience that some docs tend to take the spouse's stories of dementia with a grain of salt. The doc probably doesn't realize how severe the situation is. It should help that the live-in is quitting - help in the sense of making the point to the doc.

Frankly, I'd say that if the doc won't agree to admit her, you should call an ambulance and have her taken to the hospital emergency room, where he'll be called to come and see her anyway. I hope that won't be necessary.

BTW, admitting her to the hospital is NOT a sign of failure or giving up on your part. It's a sign of you doing the best thing possible for her safety and to get her medical situation straightened out.

As you can tell from all these responses, we're all with you and thinking of you. Please let us know what happens.

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Check that 800 mg of Seroquel; does not sound possible. My wife only takes 25 mg at bedtime and sometimes another 25 mg during the day, if agitated.

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(you wrote in part:) "My only suggestion is to second your idea about admitting her to the hospital while they revise the meds."

I heartily applaud that statement. My Mom has had to have it done twice in 3 years (and, the last time, I really thought I knew too much to let it happen again!) HA! Mom's overdose was my doing. She has dementia to the point she, long ago, quit owning responsibility for her own dosing. I just wasn't as smart as I thought I was and, in an over-zealous attempt to keep her from ever having tremor, I overdosed her on Carbidopa-Levadopa. Unfortunately for Mom, she had to suffer for it. Oh, I've forgiven myself O.K., but now I really AM smarter cause I realize I'll never know-it-all, where this damn disease is concerned.)

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I don't know about being over dosed, but I started giving Mother Seroquel again--1 tablet, 25mg--at bedtime. It's only been a few days and I don't know that I really saw much improvement, but this morning she was seeing a dog getting up on her bed and it went from there. Needless to say, we don't have a dog, but she was convinced he was there. Luckily, comparatively speaking, she only sees things or thinks she's holding something, but today has been worse than usual. I didn't give her the Seroquel tonight. I couldn't remember why we hadn't kept on with it when it was first prescribed, but I guess I know now.

I hope her doctors can help your wife. I know this must be terrifying for you both. God bless both of you.

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GREAT NEWS

My wife IS BEING ADMITTED ON PRIORITY BASIS TO COLOMBIA PRES. HOSPITAL TOMORROW....

She and I are both looking forward to this help.

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The Following messages are in response to the news that the wife is going into the hospital.

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I can’t describe the feeling any different than my subject line.

Yes, my wife asked for help but the reality of the moment is overwhelming

Last night we didn’t sleep just tossed and tossed

Maybe one hour and then we dressed to "go to the hospital"

Then a one hour drive reviewing how important it was for her to realize that she needed help to overcome her demons whether caused only by the pd meds or any combination of her life story.

To see her so scared and fragile and vulnerable made it difficult to see the traffic ahead.

Then....oh boy....
A private psych unit within the huge hospital complex but...a lock down environment...that really was the bottom of the barrel. she winced, she cried and with hugs she agreed to "give it a shot"

I am a sensitive person...this was the last thing I wanted for my wife.... even knowing it going to be less than 30 days.. its certainly not an assisted living facility...this is the real thing... not pretty... even knowing she and therefore we would be better for it providing she gave it her all....but it was not pretty...

After an introduction of the staff and then a her/me background discussion,, I left...but really only my body walked out...

As expected she called 2 hours later begging me to take her out. we agreed she would give it her best...after all she was the one who asked for help... otherwise the door out would be a revolving one.

I’ll visit tonight but I know it will be heartbreaking....

dear friends .... we all suffer from this f......g disease, some of us manage to handle it better than others...but there is no substitute for letting it all out to a unknown, invisible group of people around the world who share some understanding of each other. its a fraternity that should never exist but it does. Thanks for letting me sit down at the keyboard, put my heart and brain in perspective and know that whoever is reading this DOES understand. There is nobody else who could or wants to be a listener.

LIFE SUCKS AND THEN YOU DIE!!!!!!!!!

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Most of us on this list can relate and understand. Five years ago my husband "lost it" while in the hospital and we have had several very bad instances since. However, with careful adjustments of meds, etc., most of the time since then we are doing quite well. I never would have thought it possible at the time. In fact, since things are quite well our kids have encouraged us to travel and tomorrow we leave for a European trip. We have a stop for a few days in NJ/NY with relatives so if things don't go well we'll turn around and come home.

I do know how horrible it is for you right now but please have faith that things will improve.

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I don't know if this will convey what I'm trying for.

But I just found this group. And listening to you -- the way you express your heartbreak, your anger, your hopes, and most of all your love -- makes me feel that it is possible to "put my heart and brain in perspective," too.

I read your words over and over. Do I understand? I don't on one level, but I do on another. And as a member of this "fraternity that should never exist," my thoughts are and will be with you and your wife.

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Try to look at each day as a day closer to when Joyce can return home in much better shape. Enough of the replies relate that this happened in their case. It will happen for you and your wife too. Look for the first visit when you see a turnaround and the start of the improvement that we all hope and pray for.

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I am so sorry for what you are going through. I will tell you what helped me. I had my mother who didn't know who I was. She had had many small strokes and was recovering from a broken hip which had been set wrong, when my brother brought her to me. He said you have a beautiful place to walk here now make her walk. I said but I can't make her walk because she cries and says it hurts and it breaks my heart. He said well you have two choices. You can be soft hearted and take care of her for the rest of her life in a wheelchair or you can show no mercy and make her walk which will be the best for both of you. I thought he was mean and cruel. But I thought about it and I set my goal to get her to walk around the bridges. Each day we got a little further. Sometimes she pleaded with me to get a wheelbarrow and take her home. I showed no mercy and she didn't see my tears. One fine day we got around the bridges. She lived another seven years with me running to keep up with her. I had to put bells on her bedroom door because she would take off day and night at full throttle. She even tried "the great escape"-trying to climb out her bedroom window. I couldn't stop laughing.

So when I say "show no mercy, do what you have to do", I am saying it with all the love in my heart. I want you both to make it.

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Your wife is probably going to get worse before she gets better. Do be prepared for that. My husband's two weeks in the psych ward were a nightmare for all of us but the drug holiday HAD to be done in his case and the restart of meds took weeks to turn him around but it did turn him around and gave us several more years of comparative peace.

Having said that, would you consider looking into assisted living facilities. My husband went in to one on Monday. I think it was the hardest thing I've ever done but feel it was the right thing to do both for him and for me. He has been acting out at night there but they can look at it with professional detachment and handle him far better than I.

Incidentally, if anyone wants to see where my husband is, email address is: ashford_court@gracemanagement.com. My daughter and I have been having dinner with him. During the day he seems content and when we left last night he said, thanks for coming ladies so all's not bad.

You could do this as respite to see how it goes. You really have to check out a lot of places. This is the only one in our area that we both agreed would be right for my husband. I took him with me and we checked out about 12 facilities.

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I am so sorry for your pain and that of your wife. It is true that life sucks and then you die--it is so unfair a lot of the time. I am on this list for a dear friend of 40 years whose husband has pd. He is now in a nursing home and has so many problems so quickly. He has to have a feeding tube next week. I can also relate to your problems because I have a son who is autistic and I am facing a choice of where he will live after I can no longer care for him and it is so heart-wrenching. Thank God your wife has someone who truly loves her and is trying to do the very best thing for her. God Bless you both.

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