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Topic Extremely Frustrated and Don't Know What to Do Go to previous topic Go to next topic Go to higher level

By mytngenes On 2011.07.25 20:28
Friends, I am really having a difficult time with the behaviors my PD husband is exhibiting. I am so frustrated and angry-with this disease. I try not to get frustrated/angry with him, but honestly, it is becoming difficult.

Part of my frustration stems from the fact that I don't know if this behavior is somehow due to the disease/meds, or if its just him. Those of you who are caretakers of a spouse with PD, do they knowingly lie to you to cover up things that they do?

My husband is 58 yrs old, dx'd for 13 yrs, had DBS surgery in 2006. I believe that he is exhibiting symptoms of dementia (problems with memory and poor decision making, etc). He's not able to work, stays home while I am at work. His 89yr old mother "takes care of him", and his sister comes by nearly everyday for portions of the day. He has not driven in about 3 yrs.

I have a strong suspicion he is either involved with pornography on the internet or phone-sex. In fact, I'm almost positive. Whenever I mention anything of the sort he adamantly denies it and then refuses to speak to me for hours-claiming a "spell". And there are other indicators, with the sudden turning off of the computer/hanging up the phone. Also, whenever I question him about anything--why was the front door unlocked when I got up this morning, after I locked it last night when I went to bed, did you go outside during the night? He denies it and blames his 89yr old mother (I know it wasn't her) and then refuses to talk to me.

I could go on and on with examples of things he has lied to me about. One short story to illustrate. This past Sat we took a day trip to visit my parents who live in ass't living in a town 3 hrs away. I fixed sandwich for him to have for lunch, explaining that we could not afford to eat out both lunch and supper and so we'd stop and have a nice supper on the way home. Before we pulled out of the driveway, he told me he had asked his mother for money and wanted to go to McD for an egg McMuffin--he'd already eaten breakfast. When I refused, he was angry and would not talk to me. After we'd driven 30 miles (at 10am) he said he wanted to eat his lunch, so I gave him his sandwich and bottled water. In a few minutes he asked me to stop and let him get a cup of ice for his water, so I let him out...he comes back with a Sprite and a candy bar--no ice. On the trip home, he gets mad at me because in a conversation about having sex, I told him I did not want to discuss it while I was driving (frequent discussion topic). We were about 30 minutes away from the place where we were going to stop and eat. He asks me to stop and the McD up ahead so he could go to the bathroom.....out he comes with his supper! And he refuses to talk. Needless to say, I did not stop at the planned restaurant for supper (I did not eat). When I asked him why he did that, he pitched a fit and was mad all the way home.

Now, is this common? Is he acting out his frustrations because of the disease, or is it just him trying to get back at me? Or all of the above? Should I seek professional help for him? He had 2 visits with a psychiatrist last fall who seemed to just brush us off when I wanted to address changing his anti-depressant. I'm at my wits end with this behavior from him. Whenever I try to discuss it, he gets mad, blames me and then refuses to talk to me. I know I'm not handling the situation well...frustration is winning.

I welcome your thoughts. Sorry this is so long.

By karolinakitty On 2011.07.26 00:29
I can only help you out with some of this, but, you could block both the computer and your phone from any porn and would have to call what ever provider you are using for the phone, but, those numbers are usually out of the country and 800 numbers that get switched to international would have to block long distance and 800 numbers from bring called from the phone...the computer you set up yourself and most computers have parental have to assign yourself administrator and set up a password but it really doesn't take that long......

As far as the stories and doing whatever he wants....the fact is just say no... he uses going to the bathroom as an excuse, you could tell him he can wait until you get where you are going... sounds like since he is losing control of his thought process he is trying to compensate by wanting to do what he wants to do..
It is very difficult for anyone to lose what they once had..especially the ability to be in control of their life..going where they want and doing what they want... I am not saying to give in, but you have to firm but gentle at the same time...
I too am confused in this transfer of "power" having to do everything myself in regards to the decision making. We still consult but most times i have the ultimate decision if it's something he can't handle. There is a fine line in crossing over. I know I don't have the answers, but, just know you aren't alone. At this point i have found no lies, or childish turn arounds. We have always been upfront and forward about where we are and he has told me if i need to say no, to say it and so far I haven't had any problems doing so......

By mytngenes On 2011.07.26 05:31
Thank you karolinakitty for your advice and thoughts. They are very helpful! I will check in to both today.

When you used the phrase "transfer of power" those words resonated with me, for that's exactly what it is! He often acuses me of taking over.

This raises another question. Whenever he's not behaving properly (whether it be lying or poor judgment) should I address that issue by making him aware of it (pointing it out to him) or should I just let it go?

Thank you so much!

By karolinakitty On 2011.07.26 08:40
I don't know what to say about the may only aggravate him...but as far as poor judgement...I, myself, approach with a soft tone and my eyes, screaming and yelling because you are just plain frustrated, will only cause more yelling and more frustration....just as an example....
We live on a lake and have a boat at our dock.. We took the boat out and for some reason the bait tank switch wouldn't turn on. he decided to take apart the dash and see what was up with the make a long story short a wire came off the kill switch and the boat wouldn't start..we had to call a neighbor and have him come out and tow us in... when we get to our dock, i threw him the tow rope and as he went to grab it my neighbor lost his phone in the lake....After all was said and done...i approached him about taking the dash apart in the middle of the lake and what happened due to that.....carefully talked about reason and how in the future I will do all I can to avoid that and he should not try things that end up like this....
We have been dealing with the dementia since the get-go...he knew he was losing parts of him and we agreed way back then that if i put my foot down he would just have to give in....i don't take advantage of that...he deserves some dignity and respect, but there are times i just gently explain the reasons and I haven't had him disagree yet

By karolinakitty On 2011.07.26 09:04
I did some further reading on the lying and most say not to confront about the telling "lie" stories, they are filling in gaps in memory, it's called confabulation....

As far as your example of your little trip escapade...if that happens again, like he says he has to go to the bathroom, or needs ice, if he wants to go in and "get" something, say Sure, I'll go in with you, or I'd like some ice too, I'll come in, or I'll get it for you...things like that... if he wants to "take a walk" when you know he probably wants to go to the local store and get a you'ld like to go with him....
redirection is another course of action...if you have a local store and he wants to go, but you know there's another reason...redirect him to do something else, his favorite TV show is on...there's a project to do together....something like that
As always they associate Dementia with childlike behavior, and we as caregivers should treat them as such. I personally, haven't reached that point i shouldn't judge, but at the same time have a hard time treating a 54 yr old like a 2 year old........

By mytngenes On 2011.07.26 09:27
Thank you SO much for these words of insight and experience. I do realize that I have not been responding in a respectful and calm tone, and that its my reaction that either dispels or fuels his actions.

You've given me some great ideas/thoughts on what to do or say, and I really appreciate your doing that. Now it's up to me to implement.

I appreciate you!

By cmonge On 2011.07.26 10:37
My husband is 54 and one of the problems we had with the Parkinson's meds was an obsession with sex-it's a definite side effect. As his doctor about it. My husband would lie but not really realize he was lying. It is awful. His dementia sometimes drives me to the brink of insanity so I feel your frustration. My husband too, has an obsession with food. I think many of these things are their fear of loss of power. They also forget what and when they ate as they have no sense of time. Many times my husband becomes so wrapped up in himself that he is not there for me emotionally. I see a therapist individually and with him. If you are not doing this I strongly suggest you do. Also, don't feel bad if you lose it with him sometimes, it's natural. We as caregivers are not perfect, we have feelings and we are human and therefore we will occasionally act as such!

By karolinakitty On 2011.07.26 10:50
Cmonge...about the food obsession....

You are right about them not knowing when they ate or even IF they ate....we have been dealing with this since even before dx..... I would always have to remind him to eat and drink....the receptors that tell them to is broke.....some days he wouldn't eat at all and others he ate constantly.....I have to say we worked things out with a schedule of morn/noon/even/ meals and I always have a bowl of ice cream in the freezer at the ready for his 2-3am snack time.....of course there have been times with the narcolepsy that i have worn ice cream and syrup....but it keeps for interesting
i keep a limited amount of snacks at the ready for him so this desire can be met when it arises....
There are many on here who deal with these food issues....on another post i talked with our specialist about and he was unaware of any issues concerning food cravings,especially sweets and junk foods... he asked me if I knew if these folks were on night time sleep aides as this will cause this....think i'll do a post and see what the results are...we don't take any so that leaves me to say no to that......

By susger8 On 2011.07.26 10:52
Mytngenes, if your husband is taking dopamine agonists (Mirapex or Requip), you should know that they often seem to contribute to obsessive behaviors, including porn as well as gambling, compulsive shopping, entering sweepstakes, all kinds of things. If he's on those meds, you might talk with his doctor about taking him off. (They should be tapered very gradually under his doctor's schedule, don't try to discontinue abruptly.)

And sometimes it is just part of the disease.

It's very hard to tell if someone is being deliberately deceitful, or if he just is confused and doesn't remember what you just said. I tend to think it's often both.


By mytngenes On 2011.07.26 11:28
Thank you cmonge and Sue for your posts. Yes! My husband does exhibit the obsessions with sex, food, spending, etc. The spending got so bad (depleted our checking acct twice!) that I hide every debit card and all the checks-keep them with me at all times. I also had to remove his name from our checking account and taken measures so that he cannot go to our local bank and withdraw any amount without my prior authorization (small town where he is well known).

He does take Mirapex (the culprit?). The Movement Disorder Specialist did reduce the daily amount (very slowly) but did not want to substitute with Requip as he said my husband would experience the same side-effects.

My husband is not presently in therapy, but needs it desperately! He saw a psychiatrist twice last fall, but the dr dismissed my husband because hubby did not feel that he needed to be there....go figure that one! I really need to get him into therapy.

Do y'all recommend a "counselor" or psychiatrist?

Thank you!

By abp0822 On 2011.07.26 16:23
Pornography or gambling obsessions seem to go hand in hand with Mirapex and Requip. See the neurologist first for a possible med change.

We saw an improvement in those compulsions when he switched from Mirapex to Stalevo.

By cmonge On 2011.07.26 20:32
Mirapex was a nightmare for my husband. I would eliminate that drug altogether if necessary. I would recommend a psychologist or LCSW. A psychiatrist is strictly for prescribiing meds for those who are bipolar, or have a specific psych diagnosis. They do not "talk things out" with you. My husband is also bipolar so I have plenty of experience with both! A psychologist will help you and your husband work out your issues and sometimes are able to explain things to our spouses in a way that they can understand better than we can. It has helped our communication issues tremendously! Hang in there!

By susger8 On 2011.07.27 10:47
Mirapex is very likely to be the problem, or at least part of it. For some reason, many neurologists are unaware of the link between DA agonists and obsessive behavior. I would try again to see if you can get the MDS to agree to taper it off (and certainly not replace it with Requip). Sometimes we can accept a worsening of the tremors and other physical symptoms as a trade-off for improvement in behavior and cognition.

Seeing a counselor might help if he has some degree of control over his behavior. I agree that a psychologist or LCSW is the way to go.


By oshroshr On 2011.07.29 23:17
My husbands neurologist warned us and continues to warn us re Mirapex but it actually helped my husband a lot. He has been on it now for a year and a half and is much more able to enjoy things. He was really bad before that but we had years of poor diagnosis and wrong meds so anything would have been an improvement.

By poppadum On 2011.07.31 09:32
Hi Mytngenes,
I've been offline for a week because I didn't have the time or energy left to use the pc as at present I'm feeling very much like you. I feel like I'm going crazy. Hubby too shows signs of dementia but he is lucid enough to react (in a really nasty way) to anything I say or do. I'm ashamed to say that last night I threw my slipper at him. Not that I would ever be able to hit him with it because my aim in any ball games has always miles out.
My own health is drastically failing (leftovers from a bad car accident and I have a heart condition) but I have the responsibility (with some help of our health care) for my 91 year old mum, a son whose back has had to be blocked with rods and hooks so he cannot bend (but lives alone and tries his best although he works full time and has to put a lot of hours in) and for hubby who also has had a severe heart condition since he was 48 (now 68). Hubby has had PD for at least 9 years. I just cannot cope anymore. Every night when I go to bed I'm hoping to wake up dead. It feels like the world is collapsing around me. If I speak one word which is not praise for all hubby "achieves", he gets angry, although until a few weeks ago I always asked carefully and nicely, and then he usually does the opposite.
A lot of his medication cannot be changed or even adjusted because of the meds for his heart and arteries. He has an inplanted defibrilator so I'm not supposed to make him angry.
My sister decided a year ago that she will not help to care for mum, nor speak to me because she blames me for mum donating each of her 3 grandchildren (my 2 and her 1) the same sum of money. She wanted the total to be halved: her share for her daughter and my share divided between my 2. Mum's intention was to show her grandchildren that she loves them all equally and wouldn't change her mind because it defied her intention. She's very much with it and it's her money so I didn't say anything after that.
The cream on the cake is that my younger son, whose 4th baby is on the way (and I'm crazy about children), has only shown me his children once this year. They live a few kilometres away but my DIL says she doesn't like me and therefore my son and my grandchildren may only meet with me at my mum's once or twice a year. The first 5 years I didn't see the grandchildren at all. I almost died with pain and sorrow. DIL won't say what I did wrong so I cannot rectify it or apologize. Her answer is always: I don't like you and you know very well what you've done wrong.
I'm on antidepressants and have tranquilizers at my disposal which I only use when I feel it's really really necessary. I have a very supportive doctor. I tried therapy but I can no longer afford it at hubby spends and spends.
I feel like I'm going to implode and disappear but who will take on my responsabilities?

By poppadum On 2011.07.31 21:10
ps to the previous message.
Regarding Stalevo: hubby has been on that for the last year or so. I cannot see any difference in his behaviour since he changed over from Mirapexin and Requip to Stalevo.
As for lying, he does something that's akin to it: when he leaves the house and leaves all the doors unlocked, it's either my fault or my eldest son who has a key, must have been in or else it must have been me. Son works more than an hour's drive away and wouldn't dream of leaving his job during the day.
When hubby comes in from the golf club and clomps through the whole house with muddy boots, he leaves muddy zigzags everywhere from the front door all around the house to the bedroom and bathroom upstairs. No, it's not him who got everything dirty (can be up to 3x/day because hes to-s and fro-s to the golf club). It's our cat Poppadum who causes it all! I told him I didn't realize that we have Puss-in-Boots living with us, and can we charge entrance fees for his viewing?
Hubby NEVER does anything wrong. There's always a 'good' reason for strange happenings, or else it's MY fault.
Hubby doesn't want me to leave the house (as if!) nowadays because I spend too much time away (so how am I going to care for mum?) while I leave the house in a shambles. He has always been used to a fairly tidy house and a wife who didn't only work full-time but who also kept the (large) garden neat and who did all the painting and decorating, curtain making, repairs (clothes and things around the house.../dad and I built 3 houses together) and made his family and friends who came to stay, feel really spoiled (welcome cards on the bedroom doors, flowers in their rooms, Belgian chocolates on the pillows, drinks on the bedside tables, empty wardrobes with plenty of hangers, reading materials and tv in their rooms... took them sightseeing and made them really nice meals). I could almost stand next to Superwoman but not now.
Up until about 2 weeks ago I was fine. I could keep everything gentle or jokey but one night while asleep some of my brain cell connections must have snapped. I've become a secret raging looney full of anger and frustration. I have to scrape every gram of self-discipline from the in-soles of my shoes because otherwise I will throw and break things. After the slipper incident hubby stood in front of me, shouting "go on hit me then, hit me, hit me..." Afterwards I had cramp in my cheeks from trying to keep in control.
All those who recognize themselves, say "aye" because at present I feel very alone and evil.

By sunshine On 2011.08.01 14:45
My heart goes out to you and the struggle you are in right now. BUT there truly is hope and I know this from my own journey that has been almost a carbon copy of the feelings you have expressed here. I felt like I had no hope and that I was trapped and the only way out was to wish I could die. I really encourage you to reach out to your family doctor and tell exactly how it is for you because, as I found, I didn't need to be ashamed of myself after all (which I was in a big way), I was burning out, I truly needed some help to get my strength back and to get my "healthy" perspective back as well. I am seeing a counselor who specializes in caregiver issues and it has been like night and day how I feel now. Just having someone to listen and also understand and to reassure me that it is normal to feel the way I felt and also to offer some real solutions to make the journey more bearable. The load was huge before and I caved in, which I know now is only human, especially when you do it all with little or no support. You have had caregiver duties above and beyond and it sounds like you really are a super woman. Now it is time to take care of "you" also because the time has come for you to nurture and replenish yourself. I had no idea how to do this. I was always told as I grew up as a child to always think of others first. I am grateful for this because it made me the person I am today; however, when presented with challenges like we have with Parkinsons, that does not really work so well because of the many demands both physically and mentally 24/7. Please reach out for help - you are very loved and cherished and it really is okay to make your journey easier on yourself too. Is there a Parkinsons support group for caregivers in your area that you could perhaps attend or a geriatrician or geriatric outpatient facility at your hospital? It may take some searching but honestly it will be soo worth it for you and you will be able to caregive with more balance for yourself and your loved one. We can cope for just so long then the challenges become too much at some point and we need a support group in our court.
I wish for love and peace to resonate in your heart once more as I can tell that truly this is the real essence of who you are.
A big hug to you. :)

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