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Topic Hungry for attention or Side Effect of the Meds?? Go to previous topic Go to next topic Go to higher level

By loola On 2011.05.05 14:50
Hello Friends,

I'm trying to keep this post light since the stories are kind of funny when not taken too seriously. It's better to smile at such things and take it with a grain of salt than to let the PDer drive you nuts...:)
It may be the meds or just pure boredom that my PD bf is exhibiting some strange and at times risky behavior lately.
He used to teach and loved the attention from a room full of students. His business is slow so it seems like he is bored and comes up with "stuff" to do around the house.
Last week, he decided to patch up some holes above the doorway at the top of a staircase. In order to get to it, he had to position an unopened ladder on the third step from the top of the stairs and climb up the ladder. His idea was that I would stand behind the ladder at the beginning of the stairs, hold up the ladder with him on it while he'd be slapping cement into the holes from a bucket, that I was also supposed to hold at the same time.
At first, i just wanted to make him happy and said:"let's try...". He managed to get up the ladder. I was holding it from behind. The cement wasn't mixed right. It was too liquid. I held up the ladder with my body weight and one arm. Handing him the bucket with cement with the other hand. As soon as he started, all the cement fell right back on top of me. At the same time I saw the whole picture of a freak accident happen in my mind. He losing his balance, that is lousy to begin with, falling backwards including the ladder and cement all on top of me and stumbling down the staircase. I got so pissed at the idea that I started yelling "TIME OUT. GET DOWN IMMEDIATELY. THIS IS LIKE KINDERGARDEN. WE'LL END UP AT THE EMERGENCY ROOM." He listened...well I didn't give him a choice and he came down. He didn't think the whole setup was stupid, he just thought I wasn't game and therefore lame. Reminds me of a five year old's behavior.
His other "hobbies" are not quite as dangerous but still weird. The other day he painted our entrance door in bright light blue. He said he wants everyone to see us...
He also is thinking about painting the whole facade of the house in bright orange or bright pink to "shock em and wake up the neighborhood." (his words).

Oh, and then the beard. He decided to grow a beard and dye it either blue or red. He didn't shave in about five days now and looks like a
I can't reason with him most of the time. He gets annoyed with my "criticism", that's what anything I say is to him, but it's like he wants the world to pay attention to him. He keeps calling the Times to get an article written about his antiques collection that he finds in the trash and had college girls interview him about some neighborhood topic. Is he trying to feel more alive in face of his condition or could this be a side effect of Mirapex, Stalevo, levadopa?

By LOHENGR1N On 2011.05.05 19:49
loola, don't know but it might be he is trying to find a way of coping? Maybe He's self conscious about his condition? You never know how anyone will react to diagnosis of Parkinson's Disease and that is just the start we constantly adjust and adapt to our changing condition. He might think the neighbors are staring and talking about him and his malady so paint the walls a day-glo color, takes the heat off him. The beard? Come on He's got Parkinson's Disease it isn't the best disease to have when holding a razor up to your throat. Really don't you think a five day stubble is sexier than little pieces of tp plopped everywhere on the nicks and cuts? (think Clint Eastwood). It isn't the hunger for attention as a driving force as I (a patient) see it, more than likely it is a longing to be normal and avoid the attention. Take care, best of luck and hang in there.

By loola On 2011.05.05 20:14
Lohengrin, thank you for your reply.
He has known about his condition for 6 or 7 years now, so it's probably not a reaction to diagnosis. He also doesn't seem to think much about it, always has too much to do and is just frustrated at times when PD slows him down.
He actually really loves and craves attention and feels the neighbors and passers by don't pay enough attention to him. He wants everyone to come inside and once you're inside you have to take the tour, dance with him and promise to come back again...It's not like he wants to make the house more odd than himself. I guess he was a bit eccentric to begin with :) Now it's just getting a bit over the top if there is such a thing, haha.
So far he managed the electric shaver well. He has the rigid kind, not the shakes. I don't care if he grows his beard and colors it purple...if it makes him happy. I'm just not sure if it does make him happy or if he's just going nutty from too much medication including the anti-depressant.
He really wants to be noticed and acknowledged, no matter what it takes...he doesn't want to leave this planet without making his mark, and who does...?

It could also be an expression of fear of losing control over his life. Who knows?

Dealing with PD is quite a challenge. Keep smiling. It makes everything easier.

By buffsrich On 2011.05.06 07:51
My MIL is the same way for attention. Once she gets you in the room she won't let you leave. She'll still be talking to you as you are exiting her little apartment area. And then when you go down and tell her you leaving to go to work or to do an errand she talks talks talks and tries to delay you even further. Hang in there and you'll find a happy medium.

By loola On 2011.05.06 09:27
Yep, he does it to me too. I'm out of things to say when I'm trying to make him understand that I got to go when I have things to do or just need to do some things to recharge my batteries. I have to say.."Please let me go" or "it's late, I HAVE to go to sleep". It seems to happen a lot right after he takes the pills and they take effect. He gets a boost of energy, but it's still better than when he gets catatonic after he freezes. Then he just sits and stares. I don't know what to do other than to wait it out. It just goes from one extreme to the other. I noticed though that he doesn't insist on his nutty ideas as much anymore because he does feel a bit weaker and knows as fun as the idea sounds to have big parties and invite all of our friends all the time or to go salsa dancing and win every prize in town, he just knows he'll run out of gas quick. I'm actually glad that he has such a creative mind and hasn't stopped dreaming. Sometimes we go out and have a lot of fun, because he can be very witty and his personality is interesting. It's just me who notices the subtle changes in his behavior for now and knows it's more than his eccentric nature.

By poppadum On 2011.05.08 07:21
A few weeks ago I found my most helpful information to date, posted by Karolinakitty dated 2011.04.08 and titled "PD Meds and Side Effects". It helped me no end. In the meantime I printed it out a few times and handed it to our regular doctor AND to our neurologist who were totally surprised by some of the side effects of certain medicines. I also mailed this site to several PDP carers who also found the info surprising and helpful.

My husband too craves attention. One would think that between the numerous friends in his beloved golf club, his involvement with his Parkies internet radio, his partaking in poetry evenings and his teaching of English conversation (we live in Belgium) he'd have more than enough attention. Alas... It never seems to be sufficient. Yet he hardly ever tells me anything. I have to guess where he's going, which he calls "walkabout". That is literally what it is for the Australians: he'll start in one place and end up doing a tour spanning nearly the half of Belgium (which is not exactly the largest country in Europe, but nevertheless...) He does start talking to me as soon as I'm due to leave the house though!

As for dangerous behaviour, you name it, Hubby does it, although he used to be the most careful an safety conscious person I have ever known. He's only allowed to stand on ground level because of his loss of balance and his implanted cardioverter defibrilator which can go off at any time when his heart does anything unusual, but I cannot keep him off ladders. He gets on them while I'm not looking, like a naughty little boy.
A few months ago I found him "working" next to a deep well from which he had removed the manhole cover. There is no way I'd be able to get him out of it if he fell in, which is not unlikely because of his lack of balance.
He still drives. Every so often I join him as a passenger to check if he's still capable and not likely to cause accidents.
Last week while I was in the car with him I realized that while driving he messed around with the car radio and hence letting the car wander over to oncoming traffic. I'm at the verge of calling his neurologist who will tell him when to stop driving, also because more and more he tends to leave bits and pieces on the floor in front of his car seat which can slip underneath the brake pedal, and yesterday I caught him yet again answering his mobile phone while driving, knowing very well that he cannot cope with 2 things at the same time. Of course we ended up having an almighty row. He seems to think that I "attack" him, even when I'm just asking him something, always as nicely and politely as possible, quite often maneuvering the conversation in such a way that the original idea seems to be his own (tiring and time consuming). Unfortunately with the latest incident in the car my conscience told me to be firm because I couldn't live with the idea that he should be the cause of a car accident which could injure/kill him and/or others.Thank Goodness he's calmed down today.

By loola On 2011.05.08 16:00
Driving like that sounds scary even for people who don't have PD. It seems that a lot of PDers misjudge what they still can or cannot do. Having conversations about those things has been difficult and quite draining here mostly without any results other than stress increase. At least the things he does don't put others in harms way. I just saw him scraping off some paint at the front gate and periodically dosing off. He would drop the tool and almost fall unconscious, but wake up right before the fall.
I've been struggling with a flu for over 10 days now and think it may be related to me dealing with his behavioral changes lately. It's like watching a sick and hyperactive 5ft8 5 year old kid. It's hard on me, I got to admit. I feel like I'm burning the candle at both ends.
I find myself screaming at him and that's no good, but he is selfish and inconsiderate about my situation. He just seems to care about what he wants to do whenever it crosses his mind with no concern that it may stress me, cause me to worry or affect me negatively. I don't think we can excuse all the behavior through blaming it on the illness. Sometimes a person starts to take the caregiver for granted and forgets that there is another human being with feelings and needs as well.

By LOHENGR1N On 2011.05.08 16:52
And sometimes We have to look in the mirror. Just a thought, You've posted about his dementia and such before. Things will never be "right" this is where the comparison to a little child stops. Children, like we all were at one time, learn by rote or repeating things until they grasp the thought or idea and learn. When dementia rears it's ugly head you have to realize that the person is for lack of a better term is now unlearning. The process is running in reverse. Does it make it any easier? Probably not but one has to realize this and try to keep it in mind because no amount of repeating or yelling about something is going to correct the problem. It can't........One can yell then feel guilty about the yelling or keep getting frustrated and angry, misinterpreting and reading things into the situation, like the guy is hungry for attention or could care less about anyone except themselves, but honestly if you examine what's happening you see you're trying to rationalize concepts into a irrational mind or thought process. So yes in some instances on the surface they may appear childish, they are going other way and shouldn't be expected to "learn" by getting corrected like one would a child or to be harboring abstract concepts not caring for anyone else's feelings or needs. Take care, best of luck and hang in there.

By loola On 2011.05.08 17:14
Lohengrin, You are absolutely right. I have to read your reply a couple more times for it to stick. One of the hardest things for me is to remain in a state of compassion and understanding, remembering and keeping in mind that his actions and behavior are related to the mental decline. I tend to forget and expect "normal" behavior by a man who I'd love to look out for me and be the strong one. I see myself taking charge more often and then I become a bit bossy. Taking charge is often necessary but I have to still try to stay light and soft which is really hard when feeling like I have to produce energy for two people compensating for his lack of initiative and chivalry that results from his decline. I'm not so good at keeping sane throughout this. He doesn't see anything wrong with him or his lack of initiative and started suggesting that I have psychological issues....well maybe I'm developing them and I'm willing to look at how I deal with the situations. Usually, in partnerships it takes compromise and learning better ways to deal with each other from both parties involved. Now, the only one who can adjust and change seems to be me. He doesn't understand. He is the real old dog that won't learn any more new tricks and is forgetting the old tricks as well.
What's a better way to deal with this than repeating, trying to correct or trying to reason?

By LOHENGR1N On 2011.05.08 19:38
loola, I don't know what's a better way to deal with the problem, there are many caregivers here going through this or that have gone through this that may have suggestions for you. You just have to try to feel your way in this I guess. Compassion and understanding is a good place to start and remember to give yourself a big dosing of each also, you'll need it everyday. You can try correcting and reasoning when you think they might work but remember it won't stick probably and again it's not his fault or yours it's just the way it has become. Take care, best of luck and hang in there.

By loola On 2011.05.08 19:51
Thank you.

By karolinakitty On 2011.05.08 23:40
loola... one thing i have come to learn through my walk with this dementia: Don't take everything personally.
Even in the "normal" PD things, like the masking and the answers that have no expressive voice to them. You can't take it all as personal attacks or the fact that they seem to "not care".
as an example:
We were driving one of the many back roads of Florida in our trips. It wasn't a very smooth road and there was some construction going on. As I hit a bump, he let out this big groan and moan because of the pain from the bump. I told him i couldn't help that and he said he wasn't mad at me that it simply just hurt. Sometimes they say or do things that we look at as personal, they are upset with us or they think we do things on purpose or....... whatever...
Like Al said, wanting them to remember things or do things that we consider "normal" or relearn things is just impossible for them. You have to remember that the learning process is fading, the memory, mostly short term, is fading, we can not expect nor should we expect them to remember everything we tell them. I think the hardest thing dealing with dementia is the constant repeating of daily things. WE need to go over and over the same things day after day. Yes, it can get frustrating but again we have to remember it is not them doing it on purpose. That it is the disease(dementia) causing the issues.
Okay, so maybe some may take advantage, others do not, but in the end we still need to give them the respect and dignity that we would give them if they were "normal".
Yelling, to me, gets nobody anywhere. Although we have been together just a short time 7 years now, we have yet to say one unkind word, or raise our voices to each other. I am not going to let a disease get in my way of continuing a happy life.
There are several words i leave out of our conversations...Do you remember?...its pointless....why ask if you know he can't answer... at least when it comes to short term things....

By parkinit On 2011.05.09 14:10
I've posted it before, but one of the more enlightening things my spouse's neurologist said to me is that character traits seem to be magnified with Parkinson's (or the drugs). I see this so much and now I can know this without getting angry or frustrated. Learning everything you can about the disease and reminding yourself about these things constantly can help you, as a caregiver, along in the journey. My spouse will ramble on and on occasionally, and honestly, I believe it is the drugs. Normally, he is not a talkative person. One time I tried to talk while he was going on and on and he rudely interrupted me and said, "Would you please shut up, I'm trying to talk!" Of course, I informed him (not knowing what I know now), that he had been rambling on for the past 30 minutes with very little said from me and this is the first time I had really spoken! karolinakitty is right. This type of banter serves no one to the better. I'm sorry, but when he starts rambling, I have to tune him out now, but I don't get upset or mad, I just know it is the disease... or the meds.

I was thinking yesterday, 'These PDers have a great out... it is always "the disease" or "the meds" that makes them aggressive, rude, angry, destructive, addictive in their behaviors, etc. They get a 'pass' almost for everything.' Then I realized that no, they don't get a pass. They have this awful disease that makes them do things they wouldn't normally do, say things they wouldn't normally say, behave in manners they wouldn't normally behave, drool, suffer constipation, have trouble breathing, along with all the other "commonly heard of maladies"associated with PD. No, they truly don't get a pass. They suffer a horrible disease.

By urbandog On 2011.05.17 15:50
Hello, this is my first time posting. I guess when the pain is great enough we reach out. Thank you all for voicing all the thoughts that I thought were mine alone. Just knowing that my personal experiences as a wife with a husband suffering from PD are not uncommon is comforting.

By poppadum On 2011.07.14 20:23
Hi All, my pc has been staying in my son's IC room for traumatized computers for several months and it's only been back at work for a few days so I'm a little late with my reaction.
At least my "time out" has given me the opportunity to think about many questions on this forum.
What follows are only my personal opinions and may not be applicable to other people.
As I've stated before, my husband too craves attention. I think it's his way to feel important still, as he has led a very productive life prior to PD. Nowadays he finds all sorts of ways to help his fellow PD patients, mainly because he has always been extremely helpful to everyone, and I'm convinced part of it is to show that he still makes a difference in spite of everything.
More and more he too behaves like a 5-year old. He too seems to be getting more selfish and totally oblivious of my needs. He no longer realizes that lots of actions have awkward/horrible/dangerous consequences. All of this behaviour is totally out of character for him, so I cannot file it under " original character traits becoming stronger". A lot of his behaviour is totally new. Some of it is probably due to PD, some of it is due I'm sure to meds side effects.
In order for me to understand it, I had to simplify it for myself: all brain cells have a function and control certain things. They also have interconnections. When these cells can no longer do their job, each lost cell will influence several areas by shutting down its interconnections. What's no longer there, cannot be used. As far as I'm concerned it is not my husband's fault because when I bring this to his attention he tries his very best to make up for it, not always succeeding though and usually forgetting after a while. He is also at the stage where he can only cope with one thought at the time. The thought that is being processed, does not allow for another thought to be even remotely present until something else catches his attention, at which point the previous thought disappears altogether, sometimes never to come back.
In order to be able to cope with all this I've now decided we have a "ménage-à-trois" in which the main players are hubby, me and Mr. Parkinson. Unfortunately neither hubby nor I get on with Mr. Parkinson but I'm afraid he is a sitting tenant and there's no way of getting rid of him. Anything I don't like I ascribe to Mr. Parkinson who has a real bad character and is very destructive. I even blame my own sometimes lousy behaviour on Mr. Parkinson because he's the one who sends me climbing up the walls, often to the point where I feel I will need to be scraped off the ceiling.
Very occasionally I get upset with hubby. I don't scream at him, but I do scream when I manage to go for a walk, away from civilization where I can yell to my heart's content. Judging by the flocks of birds fleeing to the heavens I reckon they don't don't take me seriously as a bird.
Lately I have been speaking really firmly (not loudly but very pronouncedly) to my husband, mainly when there could be/has been danger involved in his actions. I find that right now this is the only way to get through to him to and get a (temporary) result.
Sounds strange? So I'm probably quite mad, but married to a Brit I prefer to call it "excentric". Madness could be seen as dangerous whereas excentricity is quite harmless and sometimes amusing to others.
With excentric behavior all is forgiven.
Neat huh? These English terms! What we call downright oldfashioned or behind the times is "conservative" to the Brits. Just to let you know that they are so capable of toning down what could otherwise be harsh words, my husband being the number one fan of this type of language and hence he can put things so gently, still.

By cmonge On 2011.07.17 18:02
This is my first post and first time on this site. I am hoping to get some support and find a lot of answers. I think it sounds like your friend is having reactions to the PD meds. My husbands PD is complicated by the fact that he is bipolar. He has always been completely stable-until he had PD. He has had EVERY side effect known from the meds. He no longer takes any of them and recently had DBS surgery. The meds have contributed to a severe mental decline, almost like dementia. He is 54. The doctors are going to run more tests but basically I think some people just can't handle them.

By packerman On 2011.07.18 10:37
cmonge: my hubby is also 54, bipolar and has had DBS surgery.
are his psychiatrist and neurologist coordinating meds for both conditions?

By bug On 2011.07.20 17:25
HI all! This thread is unbelievable to me... in the sense that it sooo describes how my dad has been in the last month. I did a google search out of sadness and desperation in feeling so lonely and isolated in dealing with what is going on with my dad who has PD (7 years now). The question of med side effects or just for attention was my EXACT question to my husband after a recent visit with my dad. YOu all have answered my question.. med side effects.

My mom died of cancer a year and half ago and that's when I started having to hire private caregivers to care for my dad so that he could stay in his home. He has care 24/7 with 5 caregivers. My husband , kids and I live 2 miles away and see him all the time. My heart breaks for what he has to go through on a daily basis. I do everything I can think of to help maintain his quality of life, yet lately , suddenly he's been acting like the lady talked about ... a "hyperactive kindergartener" and it has really thrown me! and it's so true that he can't be reasoned with now and takes anything as criticism etc. I feel like I 'm losing my dad even though he's still here.

i wish there was something i could say to him that would let him know that he could talk to me about his fears and sadness over his situation? any ideas?

By susger8 On 2011.07.21 10:40
I have wished that my father would talk to me about his feelings about his condition, but he has never been very apt to talk about feelings. These days I think he does not realize how much his life is impaired -- dementia has a benefit in this case. As things are he thinks he is at a younger stage of his life and he does not seem depressed. How strange.


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