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I love my PWP, but...


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#1 giftedone

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Posted 04 February 2014 - 07:58 PM

Does anyone have a PWP who shows no apathy, no appreciation for ANYTHING, hatred towards ANYTHING that annoys them - including their own kids?   I have made it clear that I'm in this for the long haul, but he has go to meet me halfway.  Three years ago, he attempted to kick me out of my own house and actually saw a lawyer about filing for divorce.  He went off the deep end.  Even his neurologist told me he was not thinking correctly.  I was able to pull him to "shore" but things just haven't been the same since.  I constantly have a fear of him doing it again because he is so unpredictable.  He constantly tries to fix me.  He wanted me to lose weight, I lost weight (I am not obese by any means, but could lose a few pounds like anyone else).  When the weight wasn't an issue, then it was I worked too much.  Well, I have to work like I do to supplement the fact that he doesn't.  When work wasn't an issue, it is him constantly yelling at our son with learning disabilities.  In other words, it's always something.  This short paragraph doesn't even start to cover what I deal with on a daily basis.  Nothing or no one is ever good enough for him.  My kids and I are literally bending over backwards walking on eggshells to make sure he isn't inconvenienced in any way.  Divorce is not an option for me, but the constant worrying and not knowing what is next is exhausting.  I just don't know what else to do.  I love him dearly and we've been together for 19 years this month.  He is on an anti-depressant.  I just don't know what else to do. 

 

 



#2 christie

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Posted 04 February 2014 - 08:45 PM

Giftedone, hi, and welcome to our forum.

 

Note: i'm a PwP and not a caregiver. Just wanted to ask you if your husband takes a dopamine agonist (DA) for his PD -such as Mirapex, neupro, requip, to name only a few.... DAs frequently cause severe impulse control and behavioral disorders (these are totally reversible, and typically resolve when administration of the DA is discontinued).

 

Unfortunately,  most PD patients and their families are not aware of this significant risk when beginning treatment with these drugs.


-English is not my first language !

-Aged 39. Diagnosed at 35. On levodopa monotherapy (500mg daily).


#3 Golden01

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Posted 05 February 2014 - 08:07 AM

Christie, I am glad you posted. My first thought was "could it be the medicine?". Would be worth a try to check with his doctor, especially if these are new behaviors. 


Husband diagnosed in 2005-Medicines: Azilect, Artane, and Amantadine, Levodopa (1X/Day); Sister and Best Friend from Childhood also have PD


#4 bjenczyk

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Posted 05 February 2014 - 08:19 AM

As a PWP, I would want to know if this behavior has been around for a while, or if there are recent changes.  My wife has told me that I am less patient than I used to be, but nothing like what you describe.  I hope you can find a solution, but to me this sounds like the issue goes far beyond Parkinson's.


Dx'd 3/12 @ 48. Symptoms 7 years prior.
carbidopa/l dopa 25/250 6x daily, CR 2 pills at bedtime
No DaT scan, normal MRI. Dx'd by observation of neurologist,

Symptoms: left side rigidity when "off", sleep disruption, no sense of smell, minor fatigue, back pain

 

Still an optimist - what is wrong with me?


#5 JillianD

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Posted 05 February 2014 - 09:23 AM

Hi Giftedone,

We seem to be living parallel lives - except all of our (adult) children are no longer at home, so I get the full brunt of my PWP husband.  Similar 19 years marriage - 3 years ago I moved out very briefly, but decided to return as I knew he was ill.   Anything can trigger his anger and unjustified criticism of me.  It has taken me 3 years to get my feet firmly on the ground again as 'living in it' was and still is totally surreal.  

The neurologists - he has had 2 during this time period - have not been helpful, although the one neuroligst did say to me that if he has a personality problem it will get worse did not want to discuss it further.  I have also spoken to a psychiatrist who it turned out knew nothing about PD, so that did not help either.

 

Some answers that I have worked out for myself: 

My husband was narcisstic before he was diagnosed with parkinson's - but it was manageable.  The parkinson's has tipped him into full Narcisstic Personality Disorder - it may be that the medication contributes to this - he takes 18 tablets a day.  5 for cardiac and 13 for PD.  He tells me I am the only person who thinks he is ill and that I am using his PD as a crutch.  He is Prince Charming when other people are around, but when it is only my can turn into Prince Harming in an instant).  Additionally he has some delusions about me which are just not true.  Unfortunately all of the adult children live overseas and do not provide me with any support as they only see Prince Charming and only for short time periods infrequently. 

He does not seem capably of much empathy any more, and does not seem capable of noticing the impact of his behaviour on eg my border collie puppy - he has dragged her down the road when she did not want to walk.  She now refuses to walk down the road and he does not relate it to his behaviour and says the dog is neurotic.

When his dopamine does was too low, he was much much worse, each time it has been increased he has improved a bit.

I do empathise with you as it is extremely tough and although I have been searching for answers via the medical world, but none have been forthcoming. 

He has not been diagnosed with depression, but it is clear that there is suppressed anger constantly waiting to be expressed.   I can't recall when last he said something nice spontaneously - there is usually criticism or things going wrong. In summary, I simply don't know when the next unpredictable verbal attack will come.

I have recently qualified as a Life Coach (new career at 61) and the skills and knowledge I have gained from that helping me to cope in what is an extremely difficult home space

I'm sorry I cannot help you with solutions, but wanted you to know that I do empathise with what you are experiencing.



#6 Rogerstar1

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Posted 05 February 2014 - 12:54 PM

"Narcissists can charm the birds out of the trees when they want to while continuing to experience not only disagreement as attack but even insufficient agreement/admiration as punishable disloyalty.
 
A narcissist does not realize what he/she is doing. He/she cannot be cured, but he/she can be stopped when you stand your ground against them".


#7 Annikin

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Posted 13 February 2014 - 09:04 PM

Hi Jillian

Something you mentioned struck a chord with me and I felt it my responsibility to speak up- the fact that your husband is different with you than with others, Prince Charming you said. This is not a PD symptom necessarily- it is an abusive person's trait. Sadly I had to deal with a brother with these traits for 26 years. He hid it so well  and was so charming to everyone outside of my family that it took that long for even close family friends to see it. It sadly will not change. He too is a full blown narcissist.  I finally distanced myself from him entirely after m\y parents passed away- it was self preservation in the end. I have not spoken to him in 3 years and he does not even know I have PD.  PD and PD meds can affect your mood but it does not selectively affect the way you treat some people and not others. Verbal and emotional abuse can actually cause more damage than physical abuse. I hope anyone suffering at the hands of an abusive family member does not allow PD to make excuses for the behavior. I have YOPD- it does not give me permission to hurt others. My heart goes out  to you.  



#8 marycarolyn

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Posted 14 February 2014 - 08:57 AM

I have to agree with Annikin, that this sounds like emotional abuse, from a personality disorder which was present, maybe, and more exacerbated with the complications of PD and medication? But it is emotional abuse, from my personal perspective. I would find someone to council with if you have those resources, it will help you a great deal with helping you keep a healthy perspective, and how to deal with it.



#9 JillianD

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Posted 16 February 2014 - 08:08 AM

Thank you Annikin, marycarolyn and Rogerstar1 for your responses, I deeply appreciate your feedback and empathy. 

His Narcisstic Personality Disorder peaked when he did not have dopamine medication 2 years ago - when he was only on low dose rasagaline(azelict).  In the past 24 months dopamine has been introduced and there has been improved behaviour - although under stress it remains bad.   2 years later, he is now on Carbidopa-Levodopa and Pexola (takes tablets every 2.5 hrs during his waking hours).  

I am aware that my enormous challenge is I am living with someone who is not mentally able to be my friend and not able to share a caring relationship, and am living life day be day right now, as planning forwards is not a conversation that he is able to have. 

Due to my PTSD as a result of his behaviour (I'm mostly recovered now)  I have gone back to College to study psychology with the objective of becomming a trauma councillor, so I am fortunately in contact with a network that is able to provide support.



#10 Rogerstar1

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Posted 06 March 2014 - 02:48 PM

Just out of curiosity Jillian, what would happen if you refused to provide care-giving services when he was acting narcissistically?  Or if you threatened to leave altogether if he persisted - and then did so if his behavior didn't improve?


Edited by Rogerstar1, 06 March 2014 - 04:53 PM.


#11 JillianD

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Posted 07 March 2014 - 06:26 AM

thanks for your question, I really do appreciate it.

If I refuse he would go into a narcisstic sulk and  stonewall and show anger and aggression for days.  He would only realise what he has lost when I have gone, I don't think he is capable of doing it beforehand.   The approach that works fo rme is to respond to his behaviours with adult responses and not argue as it is pointless to argue with someone who is irrational and mentally ill.  

If I threatened to leave altogether it would be exactly what he wants to channel all his anger, resentment and other negative energy into. It is not that simple to leave someone with narcisstic personality disorder

Emotionally the best way for me to do it is just to walk away but I cannot afford to do that financially and he would like about his assets and play the PD card if I divorce him - which puts me into a lose scenario.

I have taken advice from an attorney on the matter very recently, and my options are not simple or easy.



#12 johnnys

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Posted 14 March 2014 - 04:13 PM

Im so sorry people are having so much trouble with their loved ones with PD.I know quite a few PD people and have come to realize the disease does little to our personality..

Some here talk about how sposces seem very friendly with others yet can seem so brutal with loved ones.

That is what we call domestic temper(fear and anger}people learn they can get away with it as their is little penality.If they did it outside there would be consequences.

Apouce can change the behavior of their loved one simply by not letting the offender  upset them.They get the message soon enough.

Dr. Abraham  Low wrote a wonderful book,"Peace over Power in the Family".This book use to be the best maritial advice around till marriage councelers were invented.

I am not a perfect husband but I do know Recovery.We have been married since 1970.Anyone who realy wants to know how to deal with true enemy of domestic life can find no  better source.

In closing while PD can be disruptive to physical health it should not cross into uncontrolable anti-social behavior



#13 Delta

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Posted 26 March 2014 - 09:18 PM

I don't know if I have the courage or the words to express what I feel on this topic. I don't know your PWP and can only view his response through my rose colored glasses. Is it possible that he feels unlovable and is acting out badly? I can't imagine
why any spouse would stick around after a diagnoses of PD. The future is not bright and the path is hard. I thought we'd spend these years after we finished raising our kids traveling. Not so easy with PD. I feel like an embarrassment in social/work situations. Sometimes I think the only fair thing to do is to release my spouse from my horrible disease.

But I've not been able to do that. Instead I've tried to become the perfect noncomplaining spouse. I never talk about PD with him because he likes to pretend it doesn't exist. I'm terrified I'll be left alone and penniless.
Could fear either justified or unjustified be driving your spouses behavior? Or maybe he's just a narcissist :)

#14 JillianD

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Posted 30 April 2014 - 08:50 AM

Hi Delta

Thank you so much for your post and concern, you sound like a wonderful person who has depth of understanding, and my heart goes out to you wishing you strength in your context.

I think you are correct he is aware that he has changed, but unfortunately is unable to speak to me about it - even though I am trained having worked as acancer treatment professional- he became abusive when I said I was listening to PD webinars so I have stopped doing that.  He has also told me that I am the only person who thinks he is ill -  he now takes 17 tablets a day - the PD tablets every 2.5 hrs .

 I have started studying psychology and will become professional counsellor in 4 years time with the objective of assisting people with chronic illness - both carers and the patients as I found no where to speak to  when my challenges started 3 years ago.  My husband is very much a narcissist but also has borderline personality problems.  His early childhood had traumatic events up to 5 years old, and then again later in his early teens.  I'm sure he has fear driving his behaviour, but it is not appropriate that he diminishes me as a result of that.  The neurologist has said to me that in his experience his pateints with borderline personality problems and PD have not been easy for spouses to live with and manage.

Take care, you are a special person :)



#15 Trying hard

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Posted 30 April 2014 - 08:32 PM

Hello everyone;  There is a possibility that certain medications can make narcissist tendencies worse in PD.  I don't remember all of the drugs that a neuro psych told me, I do remember sinemet, sinemet Cr,  Prozac and Mirapez.  Just a thought.  I wish all of you all the patience in the world, being a caregiver I know, understand and have had my share of all the down sides of dealing with personalities. If I could see, taste, smell or hear PD long enough to catch it, well I'd trash the living daylights right out of it, and enjoy every second.

Hugs to all of you!!!!



#16 coacht

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Posted 01 May 2014 - 07:54 AM

Trying hard,

You are so right. So many side effects from the medication. the person taking them cannot see them and has impaired judgment because of them. It makes life miserable. the memory issues now and not willing to believe me really get to me now.

#17 elle

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Posted 11 May 2014 - 11:28 AM

coacht,

I am new here;  have been reading on the site a few months so I do not mean to be presumptive giving you advice.  I realize you have children at home so a complex situation.  But I do wonder if a respite is not in order.  I have a cousin/dear friend who talked me into putting my dh into residential care just for a few weeks.  It not only saved my sanity but also created a better appreciation for both of us even though my dh is also getting confused.  I may do it again.  My heart aches to see you say how miserable it is.  Surely you deserve a break!



#18 coacht

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Posted 12 May 2014 - 07:49 AM

Elle,
thank, I try to get away. She was a chaperone on a trip for the kids and four days really helped. She would actually need a chaperone, but doesn't get that. Have to get through all of the graduations before we look at anything else.
Thanks again,

Coach T

#19 elle

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Posted 20 May 2014 - 02:40 AM

I hate Parkinson's!!  There, I said it.  I used to think it would not be so bad being a caregiver because there have always been so many interests we have enjoyed...I thought we would keep sharing, albeit in a more quiet way.  But it changes the PWP's personality so much they are hardly recognizable!  And being a 24/7 caregiver with no family is changing me too....

 

Lifetime movies about witness protection programs are becoming my favorite..



#20 Trying hard

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Posted 20 May 2014 - 07:51 PM

Hi Elle,

Being a caregiver full time 24/7 is exhausting, I know, I'm there right now.  I think we all hate PD, I always tell people both of us have PD my DH has the physical and mental and I have the emotional.  My DH is not the man I married, I don't know who he is anymore.  The house is so quiet as he wanders off into his "place" in his head as I call it.  He works hard at his PT and ST and wants so much to regain something of his life.  The sad part is that he doesn't realize how much he has changed.  I try to look at it as that maybe for him that is a good thing.  For me it is hard because like you I have no family, well there is family but they left long along, not strong enough I guess to help.  I don't give them much thought.  What I hate the most is when people say to take care of myself, yeah and just how do I do that.  So I live through the really bad days, and try to enjoy days when at least part of him is with me.  I don't get out much except Sat mornings for shopping and collecting medications.  I sorta picture myself as a monk in training to take a vow of silence.  I survive by exercise, yoga, and started now to post on the forums allows me to give support to others. I'm also learning new things, and starting to do things, like sewing that I never had time for when I worked. You are right, the personality change is the worst.  What do you do to keep  your sanity?  How do you deal with those days where you feel like you just what to explode but know you can't?  How long have you been doing the 24/7 caregiving?  Waiting to hear from you.

Hugs to you Elle, know you're in my prayers.






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