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By Checkmate On 2017.05.14 23:01
Hi everyone
This is my first post. I am so exhausted from an overwhelming weekend of emotions. My DH has had medications throughout his 15 yrs of parkinson's that have caused him to visit porn sites and phone calls etc. He is off the latest medication neupro patch that caused his latest episode in February. However he has been saying inappropriate requests to our 20yr old daughter which we have shugged off in the past.
However this weekend he looked her in the face and asked her if it would be OK if he put his hand on her 'Butt' sometimes. She asked him if he thought that was appropriate and he answered "yes'. We are in shock and realize that she cannot be in the house on her own with him. We also have a 13 yr old son. I feel that both of my children should not be alone with him. We are well aware that this is the parkinson's and not him. However I have to protect my children. I'm thinking it's time for long term care. We feel really sick about this situation and my daughter is finding it difficult to look at him. I will be speaking to his neurologist about this. I work full time and am so emotionally drained. Has anyone had experience with this type of situation?
Thank you all

By lurkingforacure On 2017.05.15 00:18
Hello checkmate,
We too have children still at home and have had the same cloud hanging over us for different reasons. It is an impossible position to be in, your husband v. the children. I put keyed locks on the children's bedroom doors, removed the knives in the house except for two crappy paring knives that will barely cut butter, and rarely leave the kids alone with my husband (and when I have to, they stay in their locked bedroom with charged cell phone at hand).

I tell the kids it is the PD and not their daddy, too, but they remember him lunging after them (with great speed, when angry, he can move like he never had PD) and are still afraid of him.
They are afraid for me when I am with him alone, and I hate it that my kids have worries like that.

As difficult as it is to live this in our own home, I am thankful that we don't have the sexual issues you are dealing with. I would call the neuro and advise him/her of what is going on and see if anything might help. I was shocked to learn recently that mirapex can cAuse or worsen hallucinations, and our neuro reduced the already very low dose we were on to an even lower dose. (I don't think the lower dose has helped the hallucinations, fyi).

Please keep us posted.

By Elaine7 On 2017.05.15 00:20
Yes, we have been dealing with this for several years now. When my husband was evaluated for DBS, the neurologist wrote in his report that my husband had inappropriate behavior directed toward the nurse. His MDS weaned him off of Mirapex, but it didn't stop. Now I've had to take away the computer because of the inappropriate material he was sending to our friend's daughters through Facebook chat. The Psychiatrist tried to change his meds to help this, but it interfered with the Carbo/Levo and increased his anxiety and hallucinations to a point that he was hospitalized and started on Clozaril/Clozapine which has all kinds of Black Box Warnings. But they said that we are running out of options. Now he's in a Rehab Center trying to get some mobility back. This damned disease is bad and the medication can have devastating side effects. My husband is angry with me because I've had to take away the truck keys, the credit cards, the check book and now the computer. So I know how exhausting this can be to fight all the time. I just want you to know that you are not alone and I would recommend that you discuss this with his neurologist. Preferably a MDS. They have dealt with this before, but my husband's MDS wanted the Psychiatrist to treat this. And when my husband ended up in the hospital, the Psychiatrists were the ones prescribing the meds.

By LOHENGR1N On 2017.05.15 00:43
checkmate, check with his neurologist to see if he is on any other dopamine agonist this class of medication are notorious for causing problems like you describe. Also people should be aware that it can take time to get them out of our system. Some like Artane can take up to 3 months to get out of our system. Remember they took time to build up to a therapeutic level and it takes time for them to clear. Movement disorder specialists are just that and focus on movement. Which sounds like Elane's description of her husbands mds as he wanted a psychiatrist to deal with behavior problem. Good luck and I'm sure others here will weigh in with help also.

By pinki53 On 2017.05.15 04:46
Every day when I think I can't take any more, I will remember this.

When asked if my DH has any allergies, I list Comtan and Artane. Several years ago, both caused such severe hallucinations I won't take any chances of him being given these again. He had no such sexual issues thankfully.

By Checkmate On 2017.05.15 18:18
Thank you everyone for sharing with me. I know it's not easy but it definitely helps to know that there are others out there that do not judge because they walk similar paths. We are seeing the psychiatrist and the neurologist at the end of the month. I am also speaking to a social worker to see what our options are
for long-term care. I am hoping some miracle will come but I know that's not likely. Having kids at home definately adds another dimension to this horrible decease.
Thank you. You are all in my thoughts.

By pinki53 On 2017.05.15 19:51
I was just thinking. I had an uncle who had Alzheimer's and would make "advances" grabbing a woman's breasts or butt. I don't know if it was part of the Alz or from medications.

By Checkmate On 2017.05.19 20:27
Hi Guys
I am thinking of putting locks on the kids bedroom doors. Lurkingforacure did you tell your husband why you were putting locks on the doors? I know my DH will be furious with me (but these days he's mad with me all the time) I had to take cards,computer, car away plus make all the family decisions, so of course I'm the devil.
Either way I will protect the kids.

By lurkingforacure On 2017.05.20 13:47
Hi Checkmate,

Yes, I did tell him why. We had some horrific incidents and the last one was over the top, even for me. I had no choice but to secure the kids' rooms unless my husband moved out. I think he gets why, but he too is angry. Apparently it's our fault because we can't "move on and forgive and forget" and act like nothing ever happened...he has never apologized, but even if he did, I'm not sure the kids could really forget their dad's attacks, so I don't even bother pointing that out.

I had the locks professionally installed and there was a lot of noise with the guy banging around, just fyi. I gave each child a key to all the locks so they could get into each locked room if needed.

Also fyi, whenever my husband has had one of these incidents, he can really move, running actually, like he has never had PD. It is both incredible to see him able to move like that, and scary as hell. Our traveling together has come to an end because of this, another loss:(

It really sucks to have to worry about your kid's physical safety on top of their mental health and well-being because of PD.

A tip: keep a spare key somewhere out side the room that is day we closed the door and no one had a key because all the keys were inside, locked up! I tried picking it the lock, but eventually had to call the locksmith. The lock is so good that he had to drill it out. It was an expensive lesson, but it did make me feel better knowing that the locks are pretty much impossible to pick!

By LOHENGR1N On 2017.05.20 16:47
Lurking, I just read your post above what jumped out at me was 'fyi, whenever my husband has had one of these incidents, he can really move,running actually, like he has never had P.D." That seems like his medicine. For whatever reason it sounds like he is having a dump or rush of drugs all at once because of his quick movement if he were a car we'd saying he's running on all cylinders. Like he is running in some hyper drive mode. I know this is not what you want to hear watch for some pattern of medicine related or time from dose to these actions (like you don't have enough on your plate with everything already and you want to add another thing to watch and figure out) A little over a month ago I noticed my generic carba - L-dopa was off, not working the way it normally does. The questions flooded my mind is the P.D. progressed to a point where this would be normal? It seemed to act quicker, not last as long and when it cutout my functioning dropped like I stepped off a cliff. My neurologist asked if I wanted to up it? I said next visit I want to look into a couple of things first I see him next month and what I found out was it wasn't me or my progression. It seems the drug company had switched the excipent which is the substance formulated along side the active ingredient in the pill facilitating drug absorption. The absorption was quicker however it didn't last as long and when it started to wane it just cut out fast. Of course the pharma site didn't announce this it was in the comments at the end of the site and to make matters worse they had tried the same thing with a higher dose a few months ago with the same poor results. At times it is hard to tell which is worse the disease or the drugs but that said the baseline disease evident when these drugs cut out the disease to me is worse. But damn what do we have to do hire a privet detective to our health team? I'm just glad my neurologist listens to me and is open to working with me and not just one for upping the med's right away

By Checkmate On 2017.05.20 17:31
Thank you Lurkingforacure. I really feel for you and your family. They are great tips that you gave me. I have not spoken to my DH about the last incident with my daughter. I am waiting for our phychitrist appointment at the end of the month and I will bring it up during that meeting . I know he is going to accuse me of turning the kids against him and denying that anything happened at least the way we perceived it. I am also visiting some long-term care facilities for him in case it all gets ugly and he doesn't come to terms with his issues. I thought I had secured all avenues of movies on demand etc but when I got my bill it was over $200 in adult movies. I have locked that down now for sure. He has not apologized for that either with no empathy or regard as to how I will find the extra funds to pay the bills. Instead he is so mad with me for accusing him that he is questioning everything I buy for the kids saying we don't have the money. He also gets very jealous of the kids.

By pinki53 On 2017.05.20 19:11
I've been reading all this in horror. If I may ask: How old are your PWP that you still have children living at home and what ages are the children that are having to cope with this?
Here I thought that my PWP mistreats me (curses, treats me like his personal slave, etc.). But I must count my blessings that at least I'm not facing the troubles that many of you are.
I've often thought that communication might be easier if DH could type on a notepad or whatever for me; or that he might enjoy spending time on the internet if he'd just learn to use it (he'll be 76 this year). Now I'm glad he is computer illiterate!

By lurkingforacure On 2017.05.20 21:42
Checkmate, our scariest incident was at Christmas and got us into the neuro asap-they scripted nuplazid which we are still on (another story, as I don't see that it is helping, and we'll be discussing that with the neuro at our next appt.).

In retrospect, I think my husband has always been jealous of the time and energy I put into our kids, and I personally believe that underlies the physical incidents we have experienced because they are directed at our children. I'm wondering lately if he even wanted children, and mourn the love and support my kids have never really gotten from their dad. Both sides have missed out so much. I can't blame that on PD, but it certainly hasn't helped:(

Al, I really don't think it's an issue with the meds wearing off. When we have one of these episodes, my husband has always been angry, and when he gets mad, even early in our PD journey, his adrenaline soars and seems to simply overcome the dopamine deficiency. Plus, we take name brand, so haven't had to deal with the issue you mentioned about the generic substituting ingredients. It's so good that you found that out, and just goes to show yet again how proactive we have to be.

By LOHENGR1N On 2017.05.20 22:15
lurking I wasn't saying it was a case of wearing off. I am saying it seems like a case of the medicine kicking in all at once so it was flooding his system.

By Checkmate On 2017.06.07 23:17
Update. So since my last post, we have been to see our family doctor, our neurologist , our phychitrist and our social workers. My husband is now agreeing that he has spoken inappropriately to our daughter, he is very embarrassed about his behavior although I still don't think he gets just how serious it is. I have put locks on the kids doors and explained to him why. We spoke about long term care and he is now on the waiting list for a facility close to our home. I have been extremely emotional and sad over this new development. He on the other hand is happy to go. Although I am glad that he is not reluctant to move out it also feels like we mean nothing to him. I know he blames me on almost everything and has said on numerous occasions that he is leaving but I feel after all the years of keeping the family together it has now blown up in my face. The kids are now exposed to just how bad our situation is after years of trying to protect them all and trying to raise them like a 'regular' family they now have to see their Dad leave (and shows no emotion ) that he will not see them every day. The kids and I will be getting counseling to help us in this transition. Having given my all for all these years why am I feeling like it's my fault that he is happy to leave. I know on one hand that it is his parkinson's brain causing him to see me as the enemy but it still really really hurts...
Thank you all for listening.

By lurkingforacure On 2017.06.08 17:06

I am so sorry you are at this point. I think that with PD and younger families, maybe it is common for a detachment like that to occur.

My husband is jealous of the time and energy I put into our kids (which, honestly, would be less if he made any effort where they are concerned) and I have read that is not unusual in our situation. No matter how much attention I give him, it is never enough, and he competes with our children for my time and attention. Our kids see this as well, and they resent him trying to pull me away from them. It's a lose-lose-lose situation all the way around, and so weird and messed up, but that's PD.

In a strange way, though, perhaps it is not so unusual for someone to be glad to leave people who they view as a threat to the time and attention they get from their caregiver/spouse. Maybe they're not so much actually glad to leave, as they are not sad about it.

In my husband's PD mind, he would get a lot more time, attention, and affection from me if only our pesky kids were out of the way! So I understand why he may resent them, although it's still wrong and a terrible situation.

I wonder if your husband will still be "glad" to have left once he gets into the care facility. Please keep us posted, many of us here are in the same boat:)

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