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Topic pd husband angry at me... Go to previous topic Go to next topic Go to higher level

By carefulcohen On 2012.02.23 23:37
We've been married for 34 years. I'm 57, he's 64. He was diagnosed with PD 10 years ago, and it got much worse this past year. But, it's the disintegration of his personality and our marriage, that's so painful. He's become very immature, and developed the delusion that I make his symptoms worse. He believes I'm his biggest 'stressor', that I probably CAUSED his PD, and (it gets worse), that to survive he needs to separate from me. We went to family counseling (separately) with our adult children, and we tried to accommodate his paranoia (we made the master bedroom into a separate apt. for him, as per his request. We installed his own kitchenette, entrance to his room from the outside, adding extra security to the door, his own bathroom, and computer. We acquiesced to all his demands, because he believed it would improve his mobility and energy levels. His greatest wish was to never have to see or relate to me. But, the 'stress' and PD symptoms weren't alleviated. So now (3 months after the first family meeting with the therapist), he became even harder, more fixated in his delusions that I am his worst enemy. He doesn't want a reconciliation with me, he feels his only hope is to divorce me or, at the very least, move into a separate apt. That's so unrealistic considering the unreliability of his meds. I know, intellectually, that his beliefs are a bona-fide psychotic delusion, I know his blaming me is part of his disease (or, beginning of dementia, or, a side effect of the meds..) But it really hurts. I love him. He doesn't let me have any contact with his doctors. (He 'lets' our wonderful adult daughter accompany him.) At first, I thought his decision to exclude me from his PD struggles was because of his fierce independence, but it changed to something that feels....well, hostile. And personal. I feel so sad and lost and helpless. (Sorry for dumping on you guys.)

By susger8 On 2012.02.24 07:53
That's terrible. What an awful ordeal for you.

Many people here have observed that the PD meds can contribute toward delusions and other cognitive problems. Has your daughter brought up the behavior changes with your husband's neurologist? Any possibility of adjusting his meds? Otherwise I am at a loss for ideas.

Blessings to you.


By packerman On 2012.02.24 09:41
glad you found us. welcome.
can you get you adult daughter to check out this forum?
it might give her some insight and help her with his meds.
i agree--they could be contributing to the problem.

By carefulcohen On 2012.02.24 10:40
Yes, she spoke to the dr.'s assistant on the phone (behind my husband's back, as it were- he was overly controlling even before he got ill...) She told me yesterday that at the most recent apt., the neurologist gently steered the conversation to the cognitive/psychological aspects of the disease, and (he was oversensitive even before he got sick...)he became very insulted/upset/agitated. At the merest hint that he might become emotionally/cognitively impaired. Towards the end of the family intervention session our therapist gently insisted he 'see' a super-specialist, a shrink specializing in Parkies. He argued, "But I saw a regular shrink for 45 minutes, 2 weeks ago. Isn't that good enough?" The therapist said, "No. You MUST see a specialty shrink." Well, he didn't reply. I have no inkling if he'll listen.
Thank G-d I stumbled upon this website. Thank you for your support.

By carefulcohen On 2012.02.24 10:49
Oh, and regards to the meds...He IS being tapered off meds that tend to create hallucinations-psychosis. I don't know who to feel sorrier for now..him or me. This morning the thought occurred to me that his talking about leaving me, might be just be talking 'smack', a big bluff.. And, when me and the kids were driving home, and the reality of his wishes were finally sinking in, the thoughts that crossed my mind were: At least I won't be obsessed about his safety (locked away in that 'cave' of his), at last I'll be able to spare some energy toward my own health and fitness..

By susger8 On 2012.02.24 13:28
If I were in your shoes, I'd be seriously tempted to take him up on his threat and let him try to get along on his own.


By lurkingforacure On 2012.02.24 16:06
I was going to say what Sue said but didn't want to come across as a wicked witch. Giving him the space he thinks he needs for a bit would not only let him have his way (you mentioned he was controlling before PD so this would make him happy), but you would get some much-needed rest.

It might also give you some time to evaluate the relationship. I'm reminded of the saying "be careful what you wish for"...

By LindaRhea On 2012.02.25 00:17
I am so glad I found all of you! I've been living with my husband's increasing anger and thinking it was just me. He just told me not to help him because it makes him feel helpless - then he told me to "get the h--l out" Boy am I tempted! He is much nicer when other people come around.

By carefulcohen On 2012.02.27 00:21
I AM withdrawing emotionally (for my own mental health and self-respect). I observe myself going into a slow burn and watchful waiting. I'm not going to ask him to stay and I'm not going to ask him to go. I'll be fine however this plays itself out. I won't meet his meanness with negativity. I'll let him stew in his own juices. But it IS satisfying that the kids are outraged on my behalf and argue with him (when I'm not around) that he's not being fair. It's also amusing to hear that he's ticked off that people think he's off his rocker. (So said the kids and the therapist when I spoke to them before the session) Boy, is the atmosphere in the house strained. Just 'cause he's crazy, doesn't mean that he's not a jerk. Just 'cause I love the Dr. Jekyll in him, and value devotion and loyalty, doesn't mean that I'll allow myself to be abused. Thank you for giving me a forum to express and share the weirdness of my life.

By Reflection On 2012.02.27 07:08
Wow. You are describing my life. Though you are dealing with yours rather better than I dealt with mine for years - it took me way too long to get to where you are.
"The weirdness of my life" - yup.
I do echo the comments that a significant part of your husband's behavior - though perhaps not all - might be caused by medication. Though - if he won't give up or reduce that medication, that does you no good.
Good luck, and thank you for sharing.

By lurkingforacure On 2012.02.27 21:52
I'll just throw in here that his family might be angry at him because they fear you may leave him or he may leave you and then THEY would have to take care of him and/or deal with him all the time. Read past posts to learn that family can be more cruel when dealing with PD in the family than strangers. Sad, but true.

By carefulcohen On 2012.02.28 15:41
Lurking, one of my daughter-in-laws said openly to me (the last salvo in her arguments on why I should not divorce him...After she went all mystical on me and said we'd meet again in the afterlife...which I never gave a da-n about, anyway), was, that the kids would be 'stuck' taking care of him. I don't find her sentiments the least bit offensive. It's obvious he'll have to go into a nursing home if he continues to reject my proferred help, and turns to the kids for help. Does he not realize that? Every blessing that man has has, came to him through me. Ingrate. I'm tempted to make a list of all the benefits/blessings I've added to his life, and 'shove' it under his door. (That's how he insists I communicate with him now. Not by phone, and not in person. By e-mail, or a note shoved under his door. Geuss where I'd REALLY like to shove my notes??

By lurkingforacure On 2012.02.29 07:45
Carefulcohen, first, that made me laugh very early in the morning, so thank you!

Second, uh, if my DIL told me that AND I'd been dealing with what you've been dealing with....well, I might consider a very long vacation away from home. Call it a trial separation, prevention of a nervous breakdown, whatever. A thankless family, his no less (it'd be different if it were your own somehow), with a PD spouse? Dealing with the PD is bad enough, but throw in all the rest and it can send you over the edge.

Take care of yourself, it sounds like you are the only one who gives a rip about you. Do you have your own family and if so, I would consider what my own children have to say about things.

By susger8 On 2012.02.29 08:26
Carefulcohen, I don't know if you saw the thread started by barb, who left her husband briefly and came home to a much improved attitude. Not that I'm recommending separation as a solution to all problems, but it seems it can help in certain circumstances.


By carefulcohen On 2012.03.01 23:46
Posting an update: Lurking, we agreed a few months ago (Before his scary reaction (hallucination) from 'experimental'/'aggressive' Parkie meds...which segued into a more entrenched Delusion that 'I am harmful to his health'....we agreed that we would take longish separate vacations from each other every other month or so, visiting married kids- We're a few months overdue on that vacation stress-buster.....I'm very unsettled today from a tough session with my therapist. The upsetting question was 'Why DO you stay in a marriage that's functionally over?" The implied question was 'Don't you have any self-respect?' The only answer I could come up with (aside from loving him) was, "If my husband was serious about leaving me, why doesn't he insult me?? Or, yell at me? Or, (nasty thought) slug me??' I'd change my mind in a flash if he became aggressive-agressive. So far, he's 'scrupulously' passive-aggressive. We're dancing a weird marital dance, colluding and all that jazz. My 'deal' in the marriage is , "I won't abandon you like your Mother did". His deal is "I will not be violent like your parents were." But I'm doing a lot of soul-searching about the dynamics of our marriage and my emotional strengths/weaknesses and it's painful to see my deficiencies. The care-giving role has switched on us for sure. I feel like I'm empty inside (Borderline Personality, possibly??) and I'd implode without him in the center of my heart. (Needy, much?) I'm a sick puppy too, in my own neurotic way. Practically speaking, my husband receives gov't/City of New York, caregiving support, from a Home Health Aide, 6 days a week now. So I'm not like many of the spouses of Parkie's...I'm not a caregiver in a physical way. Just an unwanted spouse. My 'struggle' with our Parkinsons journey, is to become emotionally and financially independent from my husband. A burden he's desperately yearning to dump. I'm trying. I'm really trying. I DID start a part-time job this year. (Crawling toward 'independence/self-reliance') But, as much as I've made progress,the PD seems to be overtaking me/us. Please excuse this rambling post. Thank you again for this forum connecting me with people in the same leaky boat. By the way, I just finished-and can't recommend enough-a powerful helpful book that INCLUDES PD, Lewey Body Disease, and other neurological diseases, called 'Loving Someone Who Has Dementia:How to Find Hope While Coping with Stress and Grief' by Pauline Boss, PhD-she wrote another book about 'Ambiguous Losses' 'bye

By susger8 On 2012.03.02 07:13
Wow, you must have a heck of a therapist, and be a heck of a thoughtful person, because it sounds as if you have done some very deep thinking about yourself and the relationship. That is hard work to do, no wonder you feel unsettled.

I know people who have left a marriage on a split-second impulse, but for most of us it takes a lot of consideration. You have to be ready inside. Don't beat yourself up for the time it takes for your journey.


By barb On 2012.03.03 05:51
My husband was also being tapered off meds that caused hallucinations. When I left he saw a team of new doctors who further tweaked his meds. He is thinking more clearly and has no hallucinations now. Some things the doctors said I had been nagging him about for months but he was finally listening. When I was gone his children helped him. He realized how much they love him.. Now that I'm back he is much more agreeable. I've also had some time to relax so the little things don't bother me as much. His office is still cluttered but this time I didn't ask I announced I'm ordering something to cover the windows in the French doors - do you prefer curtains or blinds. We talk now and I know I can hire help when I need a break from caregiving. So far so good.

By Reflection On 2012.03.03 23:41
Dear Careful-you may or may not find this a helpful perspective:
Our situations are all different. The key is to consider your own situation, your feelings, and not be bullied by anyone - your spouse, your children, your friends, your therapist - but do what's best for you, given your feelings, values, situation. And you are the only person who can determine that. Best of luck.

By parkinit On 2012.03.04 20:24
Dear Careful -

Wow, it seems you have your hands and your heart full! My thought is that your spouse is quite delusional and if the med adjustments won't be made (per your husband's request), then he will continue to believe ill will toward you as once a delusion is set in the mind, there is no convincing the person having the delusion otherwise. My spouse has delusions. They are quite benign compared to your situation.

It is obvious he is having some serious psychological issues and I am surprised that a neurologist does not see this if he is aware that you are the focus of all his suspicions. It appears you are an agitation to him, but rather than remove YOU, perhaps it is time to consider removing HIM to a different facility for awhile until this all gets sorted out (hopefully).

Have you talked to the kids about placing him in a home away from you where someone else can take care of him and adjust his meds down slowly. Maybe a temporary visit in a facility may be just what the doctor ordered - for both of you!

By carefulcohen On 2012.03.07 23:43
How on earth can I force him yo be committed to a facility, against his own will?? His paranoia is growing, his delusion about me is actually intensifying (??), and now our kids are being put on his 'do not trust' list. He got quite agitated toward the neurologist when she tried to steer the conversation toward the 'normalcy' of paranoia/delusions. He hates the idea that he is cognitively impaired. (he's shocked and frustrated that nobody in the family seems to applaud his 'brave' decision to divorce me.) I remember that he told me 10 years ago, when he was first diagnosed, that he never wants to go into a nursing home. He just got 'approved' for daily home care help and is working with a male he likes and trusts. It allows him to feel independent and self-sufficient. How can I take that away from him? That sounds so mean. (Am I not a self-sacrificing idiot?) He has never threatened me, he just wants to 'get away' from me and from our marriage. It is a real pity that he has zero insight that he is irrational, and it's disappointing he's manipulating the mental health system. Our kids are losing patience with him. It's astonishing his delusions have gotten so extreme, so quickly. Only last year we shared a bedroom while we enjoyed Passover at our married daughter's home. Now, not only is it unthinkable that we'd share the same bedroom, he announced he doesn't want to be in the same CITY as me this Passover! So, it seems I'll be enjoying Passover at our daughter's home again, and he's choosing to go to a kosher hotel for 8 days with strangers (where he is getting the 1,600 dollars for this, I don't know.) I'm sorely tempted to e-mail him, to persuade him that we're still a family and blah-blah-blah, it won't help, he'll only misconstrue my arguments as putting 'pressure' and 'stress' on him yet again. I appreciate this website and forum so very, very much. 'bye P.S. I'm spending the next 8 days visiting one of our married kids, away from my pathetic husband. P.P.S.He just 'installed' a second 'sound machine' outside his door, to prevent me from overhearing his conversations. Aaiii!

By susger8 On 2012.03.08 07:16
The only way I know of to force him to move to a facility is to get guardianship, which is a complex legal process. My brother-in-law had to do this for his father who had Alzheimer's. I'm not sure this would be a good idea in your case, but it might be worth looking into (you would probably need to talk with an attorney who specializes in elder law). I would suggest consulting an attorney in any case, because if he does insist on splitting up with you, you need to be prepared.

It actually sounds as if his current living conditions, with a home health aide, are meeting his physical needs at the moment. The delusions and paranoia are something else again. I am at a loss, other than to say again that if I were in your shoes I would be considering leaving him to cope on his own.


By lurkingforacure On 2012.03.08 07:37

Wow, that is quite a mess. From what you've described, I see two options:
he gets his meds tweaked and you see what that might do. Failing that:
one, divorce. This is horrible to say, and it's radical, as you've been married a long time. But it does not sound like things are going on the right direction and you both are miserable. Plus, he may wreck the finances unless you already have control of all of that (if you don't, you need to get it! Lots of posts here about here about that). One question to ask yourself is this: if he did NOT have PD and was acting like this, what would you do? Would you allow yourself to be treated this way under normal circumstances? How did he treat you before he got the PD? What do your children think? You need their support if possible.

One thing about this option is that if you do divorce, it saves you the time, expense, and emotional nightmare of getting a guardianship. Guardianships are basically court proceedings in which a judge has to decide whether someone is able to make their own decisions. You would have to testify about what is going on, so would the doctor, the kids, and then your husband would be in there to have his say. He may even find a doctor or two to say he is perfectly capable of managing himself! So they can be horribly confrontational, emotional, draining, not to mention expensive.

The second choice is what you all have already agreed to do: short separations. Make sure that you are financially and otherwise protected, though, so that you don't come home to a surprise. And why not leave the date of return open? Just a thought.

Of all the things I've read about PD, this scares me the most. I cannot imagine my sweetie acting like this and the pain and hurt it would cause. He has said some very cruel things very recently and I've been cut to the core. It must be very hard for you, and I am so sorry.

By barb On 2012.03.09 09:12
Is there any way you can get your children to take your husband for a consult on his meds. You might see a personality change with a change in meds. I left and things were much better when I returned but people had rearranged my house - small price to pay.

By carefulcohen On 2012.03.13 21:29
He's very 'jealous' of his exclusive relationships with his doctors. His regimen of meds. is 'top secret'. (Paranoid, much?) He never signed a release form that would allow his doctor to speak with our daughter. It's amazing he even allowed her to accompany him to one neurologists apt. His reasoning is impractical as well as irrational. He claims he wants to move out, but refuses to figure out how the movers would move his hospital bed into another apt., not to mention the exact address of this imaginary apt. He gets very defensive if our kids ask him these questions point blank. His idea of divorce never actually included meeting with lawyers. He's living in a fantasy world. I've got 3 more days of vacation before I go home. I hope I don't get any unpleasant surprises when I arrive.

By carefulcohen On 2012.03.13 21:46
Regarding the divorce option. I did a lot of soul searching and uncovered the conviction that I don't want another husband. I want this one. (Sane.) If he makes a remarkable recovery, I wouldn't be able to re-marry him (for complicated reasons I won't go into here.) Long ago, I used to be the more 'unhinged' spouse, with hormonal fluctuations, exhaustion, etc. and neither of us considered divorce as an option. (We did go to counseling and it helped quite a bit.) I perceive him as being in the worst of bad moods and distant. But he 'only' put me through the ringer for the past 6 months. I balance that to the 32 years of: stability,kindness,conscientiousness, shared philosophy, family, history, etc. and it seems kind of...extreme. (And it's not that I have a career-lucrative or other-wise, to really depend on.) I hope he never descends into violence, 'cause that would be unacceptable. My strategy (aside from vacations from home) is to pull more and more 'authority' figures into 'our' problems, putting more and more pressure on him to 'be' as 'reasonable/rational' as possible.

By carefulcohen On 2012.03.13 22:10
Lurking, we are not living under 'normal' circumstances. We're on a journey of PD together. Not normal at all. Emotionally, the worst part: The middle of the night. I review the cruel things he said to me in excruciating detail, (like picking on a scab) and wonder if his negative opinions are completely delusional. Is it truly 'only the disease speaking'? Is there no kernel of truth there? Then...fa'getaboutit..The tears come, I castigate myself for my short-comings; it goes down-hill from there. (Masochistic, much?) This vacation is a mixed bag. The hugs and adoration from the grandkids are wonderful, but I have no 'jobs' to distract me here, no (unpredictable and meager) jobs to buoy my spirits, and no therapist appointments to share/relieve my anguish. I believe I'm stronger inside than I realize, and that I only need to be patient. If I don't like the 'scenery' that passes by my windows, I need only wait a little, because it always changes. It never stays the same. 'bye

By Reflection On 2012.03.14 08:35
Red Alert! Red Alert!
Been there, done that with the "top secret" medicines and the "exclusive relationship with his doctors."
And no, I have not been able to solve it. But I'm pretty sure that:
a) he's way overmedicated, and
b) things won't get much better until he isn't. And they are likely to get much better if he is not overmedicated - some of the paranoia, the aggressiveness, the sexual obsessions will damp down, a lot. He'll still have PD, which is awful enough.
The HIPPA rules mean the doctors can't talk to you or your daughter without his consent. They can, however, take feedback from you. So a letter to his doctors is in order. Maybe from you, maybe from, say, your rabbi. Perhaps not from your daughter, since his [partial] trust of her is worth preserving, if at all possible. Do share with your daughter whatever you write, so she can back you up. And perhaps have your daughter call the doctor before the next visit and ask to speak with him privately?
The secrecy around medications is only partly our loved one's "fault" - they have diminished capacity to judge what it's doing to them, because they are, to be bald about it, addicts. I think of it as the soldiers coming back from Vietnam addicted to painkillers - not their fault, but still must be dealt with.
Easy to write. Hard to do. I did partially succeed on the medications, so my husband is no longer nearly as scary, and his compulsions are less. But have not succeeded in repairing the damage caused by those compulsions. The sooner you address it, the more likely your marriage - or at least enough of a relationship you can help - will survive. Good luck.

By drshepard On 2012.03.18 20:41
My hubby just went through 4 months of psychosis. I am thankful (and I do not say this with meanness), that he fell and then took a handful of pills. Each time I called 911 which became a big red flag in the emergency room. From that point on, it was quite easy to get placement in a rehabiliation center where medication is one thing being monitored for hallucinations/psychosis. Don't be afraid to make a call to a mental health crisis center or 911 if the behavior gets out of hand. My guess is the people working with him will eventually "get" the behavior and will intervene. While my husband is in the rehab, I stopped visiting and it was a wake up call. The behavior is turning around.

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