Not signed in (Sign In)

Vanilla 1.1.2 is a product of Lussumo. More Information: Documentation, Community Support.

  1.  
    I just watched a disturbing TV rerun of Law and Order. A mid-stage Alzheimer man with a history of being controlling with his wife and kids all his life - struck his wife in a fit of jealous rage - causing her to fall and hit her head on the corner of a table - resulting in her death. She was his full-time caregiver in home but was in the hospital for some reason and this happened in the hospital solarium room. I know some of you caregivers are dealing with spouses with occasional rages and am mentioning this because you need to be very careful that something similar does not happen to you. It could be very real. My dh exhibited rage on 2 occasions that frightened me and I was able to get out of his reach. If you have this in your life, I urge you to medicate before something bad happens. After much discussion in the legal system this Alzheimer patient in mid-stages was sentenced to 6 to 12 years in prison. He was sane when he struck his wife, and was able to relate his deed to the court.
    • CommentAuthorLFL
    • CommentTimeJan 9th 2011
     
    When my husband struck me, the police took him to jail, even though I advised him he has dementia and he didn't know what he was doing. They didn't care. Eventually they took him to the hospital for evaluation and that began our 4 month journey in psych hospitals and various combo of meds. When I got the police report from our local police department, the officer on duty said if he hurt someone seriously again most likely he wouldd be sentenced to a prison term, in spite of his dementia. He's controlled now on meds but the thought he could go to prison if there's a future incident is scary.
    • CommentAuthordeb42657
    • CommentTimeJan 9th 2011
     
    My DH hasn't displayed any of those tendancies yet but I was told that if he did all I needed to do was put him in a nursing home but I don't know if I could afford to do that anyway.
    • CommentAuthorFayeBay*
    • CommentTimeJan 9th 2011 edited
     
    God help all of you that are still living with spouses with this disease. I don't think I could have made it through this without your help.
  2.  
    I am living in Canada so don't know if the advice I was given by the "system" applies in the US. However I was told that if I was hit (and I have been twice and done nothing about it other than to tell our Doctor and have his meds upped) to call 911 and ask for an ambulance to take him to the hospital. Most definetly I was not to call the police.
    Hopefully I will never have to do this. So far I have dealt with it by just getting out of his sight for a while. If I need to call 911 I certainly will. I never blamed him either. In is "right" mind he would NEVER hit a woman no matter what was provoking him.
    • CommentAuthorBev*
    • CommentTimeJan 9th 2011
     
    I often wonder what my spouse would do if I had to put locks on the doors he couldn't open. My DH has never, ever hit me, but he would get very angry and threatening if I locked him in. Right now he's angry with me because I told him he had a memory problem, after he asked me why I wanted him to write down something he said and I told him he wouldn't remember it tomorrow or the next day. Things go along so well for awhile, then its back to not so well.
    • CommentAuthorElaineH
    • CommentTimeJan 9th 2011
     
    Oh Bev, how I can relate to that. That’s why I never tell him he has a memory problem; after all there is nothing wrong with him! I mentioned this on another thread, but I’ll say it again. I called the non emergency number of our local police department & told the lady who answered that my DH has AZ. I told her that he isn’t violent, but I know that is a possibility & if I felt my life was in danger & I called 911 would they take him to jail or to the hospital. She told me that it all depends on the situation, but normally they take AZ patients to the hospital for an evaluation & to get their meds adjusted. Then she told me that before that happens I could go to the circuit court & petition to have him evaluated at the hospital .When the petition is approved a police officer comes to the house & transports him to the hospital. I’m sure that would go over big. Of course my DH would probably just think that he was getting to go on an assignment with the officer.
    • CommentAuthorBev*
    • CommentTimeJan 9th 2011
     
    Elaine, I believe as you do, if he doesn't realize he has anything wrong with him, then don't tell him. I really do believe that. But, today he specifically asked me why I wanted him to write something down. Because he will not remember tomorrow what he said he was going to do. It wasn't something I wanted, it was something he said he wanted and something he never would have done before today. I know that sounds very convoluted but a lot of what we are going through is convoluted. And there was another reason I went further and that was because we have important things to discuss and if he doesn't think anything is wrong with him, how can we discuss them before he gets so bad he won't be able to discuss anything? Sorry, this has been a very trying day, and I'm sure you know very well what that is like. This is all so confusing. Thank God we see the doctor this week, if he'll go.
    • CommentAuthorWolf
    • CommentTimeJan 9th 2011
     
    FayeBay*

    You're a brave lady.

    I have a number of times said there is a difference between the men and the women in both the patients and the caregivers. While there is a range in all our personalities, I can list 30 women who have talked about their DH getting angry and showing aggression towards them. I can't recall reading that about a DW with her spouse.

    We know that life can be just as hard with a DW which some of us can attest to.

    But I think on the topic of violence it's worth canvassing the participants to see whether this really is a male/female pattern.

    Has anyone taken care of or heard of a diagnosed wife that threatened her husband with violence, showed real anger with intent (like making a fist or a threat face) towards her husband, or indulged in aggressive behavior towards her husband?

    My guess is it will be between 20 and 50 to 1.

    Some of that is testosterone versus estrogen, some personality, some upbringing, some environmental indoctrination, and some about size difference. The average male is in a different weight class than their spouse and in my readings most of the rare cases of male abuse involves a switch in the weight classes. The woman is bigger.

    This is a topic a fair number of people seem to ignore or refute because of it's nature. I think that's dangerous. FayeBay was lucky she wasn't harmed more than she was and you just have to read her post to get a small sense of what it is to live with this. It is very much the nature of our women and a testament to their natures that they will try to nurture even violence. Most male caregivers control their temper. Most female caregivers control their frustration.

    I'm not sexist by nature. I have a hard time ignoring evidence (unless it's around placing my own DW). Besides, I can take her.

    Comments? Please don't hold back from completely disagreeing; but, I wonder what such a discussion would show and this topic is about violence and dementia.
    •  
      CommentAuthorpamsc*
    • CommentTimeJan 10th 2011
     
    I'm caring for a husband, Wolf. But when my grandmother had full time care at home before she died of Alzheimer's, she would hit and pinch the aides. I don't think of her as someone whose personality changed but as someone whose meanness came out when she stopped trying to behave appropriately. My mother is in early stages and has become nicer--she no longer has the cognitive capacity to be so judgemental.
    • CommentAuthorElaineH
    • CommentTimeJan 10th 2011
     
    Bev, every once in a while my DH asks me to write down things for him so he can remember (mostly names of people) & I tell him that I will help him remember the names. I also find pieces of paper in his pockets with names or dates etc written on them. I have given up discussing important things with him as he no longer can make any important decisions. I make all the decisions. I have for a long time. The thing I miss more than that is just casual conversations, sharing everyday events & telling him what we are doing tomorrow next week or anytime in the future. (I can’t tell him about anything in the future because since he has no sense of time he will bug me about any event I tell him about until it’s time to go.) And YES, I know what a trying day is like, seems like they happen more often now a days.
  3.  
    My daughter's mother-in-law was in a nursing home with AD. One day she and another female resident got into a knock-down fight. The nurse said it was just 2 old Italian women arguing.
    • CommentAuthorcarosi*
    • CommentTimeJan 10th 2011
     
    It took one episode to wke me up. DH had always been volatile (sp?), easily angered. But no matter how upset, even with his Learning Disabiitiew, he never aimed it at anyone. He'd cuss up a blue storm and even throw things, but never at anyone. That changed with his Dementia, and when I tried to correct a behavior that was unacceptable with a penalty, I paid. Luckily not badly, but it will not happen again. Anything close, and he will be out'a here.

    I really do think though, that this topic, and especially both gender experiences, need to be discussed. Here we can do so without judgement, but for those floundering with these behaviors--just as we do with incontinence and all the other wonders of our life with Alz-- we need to share and suport them. These things happen and we need every tool and idea available to deal with them.
    • CommentAuthoraalferio
    • CommentTimeJan 10th 2011
     
    My DW has never been violent or even raised her voice. She is definately more complacent now then she has ever been. Gender driven, Maybe?
    •  
      CommentAuthordeb112958
    • CommentTimeJan 10th 2011
     
    aalferio,

    I don't think it is gender driven. My husband has FTD which can cause the person to have horrible aggression, aggitation and violent outbursts. This doesn't happen to all FTD patients and it hasn't happened to my husband. He can be stubborn at times but he has never been aggressive toward me or anyone else. I think it really depends on which parts of the brain are affected.
    • CommentAuthorJanet
    • CommentTimeJan 10th 2011 edited
     
    deleted
    • CommentAuthorBev*
    • CommentTimeJan 10th 2011
     
    Elaine - I write things down for my DH as well. Everything from the day and date to names. But, if I had written down what he said, he still would have been angry. I make all the decisions as well. Today, I spent a good portion of my day doing paperwork and other things I never had to do before and I'm getting pretty good at it, too, I'm glad to say. I'm getting over that "stone in the pit of the stomach" feeling I would get about taxes, IRAs, etc. I handle it all. I used to get so nervous about it before but not so much now.

    Deb - May I ask how your husband was diagnosed with FTD? Mine was diagnosed with FTD, but has not had the benefit of an MRI because of an implant. Mine has aggression (helped by the use of Seroquel), but not the violent kind. I think he has Alzheimer's. We'll see.
    •  
      CommentAuthormary75*
    • CommentTimeJan 10th 2011
     
    Violence doesn't have to be physical. Tendencies to cruelty and aggression can escalate, I believe, with dementia, perhaps out of their frustration when they know they are losing their abilities. Caretakers are handy targets for their anger at these losses. One woman who has Alzheimer's wrote that she blamed her husband because he seemed to be always taking things away from her (driving privileges for example). This was from a journal she wrote that Joan made available for us.
    •  
      CommentAuthorJudithKB*
    • CommentTimeJan 11th 2011
     
    Ten days ago my dh was put on seroquel 25 mg twice a day because he was paranoid, depressed, angery and was on the edge of violent behavior. Well....yesterday after 10 days of almost perfect behavior considering his condition...he went off the deep end again. I will be calling his neuro today to see is I can increase his meds. I cannot handle this behavior for another 6 to 8 weeks like I did before he was put on the seroquel.
    • CommentAuthorJean21*
    • CommentTimeJan 11th 2011
     
    Judith, my DH started on the 25mg's but it was raised to 50mg's at bedtime. I don't what difference it makes about when it is taken but it has been working and he just takes the one pill at bedtime. He is also on Sertaline (Zoloft) as well as Aricept and Namenda.
    • CommentAuthorBev*
    • CommentTimeJan 11th 2011
     
    Judith, my DH is on 50 mg in the morning and 50 mg in the evening, usually around 10 pm. He was given this for paranoia, etc. He has no side effects from the larger dose. I realize others might react differently. But, I wouldn't have been able to live alone with him without the higher dose. I still have to be careful what I say and walk away when he says things that upset me, but it's nowhere near what it was like before.
    • CommentAuthorKitty
    • CommentTimeJan 12th 2011
     
    I have officially become divorced, I learned this a.m. In light of the Tucson murders, I thought about my ex-H and his permit to carry a concealed weapon obtained last year. He has never been violent. But reading the above made me even more concerned. I spontaneously called the non-emergency police last night to discuss this with them. I was told to phone another police officer this morning. Seems that they would send him for tests if I make a statement. Problem is, we all know how they can pass these tests. Then I worry that this would enrage him and he might actually use the gun on me. He has never been an angry person, but who knows where dementia can lead the mind. So, am I best to just leave this alone?
    • CommentAuthorJean21*
    • CommentTimeJan 12th 2011
     
    Wow, Kitty, what a decision to have to make. I don't have any words of wisdom but hope you will make a decision you will be comfortable with. Good Luck.
    •  
      CommentAuthormary75*
    • CommentTimeJan 12th 2011
     
    If I remember correctly, your husband initiated the divorce proceedings, and I think he would have no animosity towards you, particularly since you and he have worked together amicably on a few issues since you separated. You seem to have been able to keep his good will because you helped him when he needed it. I don't think I would do anything at this time but keep my eyes open. Speaking to the police now was a good idea, and you know what to do if it becomes necessary. I speaking off the top of my head here, but I get the impression your husband is a pretty smart guy and not one whose attention I'd like to draw to myself.
    •  
      CommentAuthorchris r*
    • CommentTimeJan 12th 2011
     
    My DH is on Zoloft for depression and resperidol for aggression. the aggression has become worse. Some time ago, the VA doctor had given me seroquel, 100 MGs, to be split to 50. That dos is too strong for him, puts him to sleep. Well, he ha become ever more aggressive, and I admit to having given him 50 mg of Seroquel on more than one occasion, just to give myself a break. Sometimes, I become frightened alth he has nevr struck me, he has come close. He had a very turbulent first marriage, and I have had to say to him, "who are you talking to????". I'm not M______, I'm chris.!!! Sometimes that actually hits him and he calms down. He was also blinded during WW2, (he has gotten his sight bacK), but I wonder how much of this is also that stress syndrom that people get who have been in a war. Anyway, so far, I have been resorting to the seroquel. I would not hesitate, however, to call for help if he ever struck me, but most of his aggression is in slamming doors, punching walls, and banging on whatever is handy. I agree that women don't generally become aggressive, and as for size, I must admit, since he became ill, I outweigh him. (LOL)
    • CommentAuthorkathi37*
    • CommentTimeJan 12th 2011
     
    My husband has FTD. has been very agitated and abusive both verbally and physically. He is on 300 mg of Seroquel XR (timed release) and 150 of regular Seroquel. It is helping so far, but he still has his "outbursts" with fist in my face and grabbing of hands and arms...very painful. He doesn't realize how strong he is...even grabed our caregiver, but apologized afterward when she told him it hurt. Working out the right amounts of the drug has taken a long time, but the hospice RN worked very hard to get it right before he was released (this week). I hate to think of returning to his PCP for drug adjustments.
    • CommentAuthorCharlotte
    • CommentTimeJan 12th 2011
     
    I am surprised that people are not advising Kitty to do whatever it takes to get the gun out of his hands. That is the advice given to everyone else here. Divorced or not, the gun should be gone.
    •  
      CommentAuthordeb112958
    • CommentTimeJan 12th 2011
     
    Bev,

    My husband was diagnosed first with early onset dementia, unknown type. Then after listening to the changes in personality/behavior, memory problems I told him about, he had a CT scan (normal), EEGs (normal), and then an MRI. The report from the radiologist just said a bit more atrophy than you would expect for a person my husband's age. The neurologist on the other hand showed me all the atrophy he saw which he felt was significant. The neurologist sent my husband for neuropsychological testing--took all day. When the results from that testing came back the doctors all said not alzheimers but dementia of FTD type. I think the clincher for them was that his personality changes came first, then the other problems. Whereas, memory loss is normally the first noticeable symptom of alzheimers disease.

    My husband is not violent but can get agitated to the point of not sitting down for hours. He takes cymbalta once a day and seroquel twice a day (25mg in the morning and again in the evening--I can give him two more pills if required). He is a patter. He will pat me whenever he is near and sometimes I do have to tell him to do it softer but he is not angry at all. Usually he's telling me how much he loves me and then pat, pat, pat.
  4.  
    One of our writers on this website has personally visited the police station and the sheriff's office and spent a long time discussing the condition at home. Diagnosis, picture, some history of the condition. (I'm trying not to say she or he)

    IF there was an incident, the authorities have a heads up and know what to do (and who the good guy is and who the bad guy is...) I think that is what Kitty should do. Just so they will have a heads up...and then they can keep an eye out .. He would never need to know she did that. (Unless the chief of police is his brother in law!)

    If I recall, Kitty's husband could be fine for days and suddenly, the slightest thing might set him off. I think that's her fear. Unpredictability.
    •  
      CommentAuthorchris r*
    • CommentTimeJan 12th 2011
     
    I'm glad to see kitty back on the boards. and I'm relieved to see that her divorce is final. she had a long hard road. If i'm not incorrect, it mostly concerned finances, but still, I seem to recall issues between them. I agree that giving the police at least a heads up concerning the gun would not be a bad idea. Especially in view of the dementia which can change in an instant and turn to anger and violence, then change again, when it's too late. Kitty, good luck with this. How is your cat doing? Are you still in a room at your friends home. that seemed such a good solution at the time.
    • CommentAuthorKitty
    • CommentTimeJan 13th 2011
     
    Thanks all for your comments. Couldn't sleep. I am now in my rental property & still going through getting it together. Basically everything had to be redone, from appliances replaced, pipes replaced, even a sewer line (!) at the cost of $4,000. I sat on this issue for a day. I have decided not to put myself in harm's way by contacting the police. Should I learn from his friend who works for Homeland Security that he is worse, I will reconsider my decision. I still get his phone messages via my computer, contacted his friend prior to Xmas. His friend had no knowledge of his whole brain radiation, nor cancer. He said he had noticed something was wrong. Had tried to meet him at Barnes & Noble, but he called about 4 times saying he was lost. Other things... So, at least I have one person in the world who knows there is dementia, has known him since middle school, & will look out for him. I have passed the torch. He himself was very concerned that my ex-H, wish that deserved an *, had a concealed weapon upon learning the truth of his condition + his own observations of him.

    Charlotte, I agree the gun should be gone. But not my life! I truly believe that if I were to get the authorities involved at this point, he might use it on me. Have settled on let him be & distance myself. Not entirely comforting, but where I am at this point. I was relieved to hear that I am divorced so I don't have to worry about insurance fraud with the driving issue. I don't have the strength to confront all of these issues. I am just trying to survive. Can't say I wasn't tempted to call the police officer whose # I was given, but an inner voice told me to let it be.
    • CommentAuthorKitty
    • CommentTimeJan 13th 2011
     
    Oh, chris, sorry, Katrina is doing great. She is such a comfort to me.
  5.  
    Kitty, I understand your doubts and fears, but I also fear for many other innocent people, killed and maimed by people of of control.
    The recent disaster last week is one we hear about too often. There are a great many, out of control, people sharing our world now. It is truly scary. These people can "turn on a dime" and do some horrific act. I fear for both you and others. Living in fear is a nightmare I have not experienced. Take care...and good luck...
  6.  
    Kitty-kiss Katrina for me and stay safe. I hope you do notify the police of your concerns about your x's instability and fire arm. As others have said-he could turn the gun on anyone without provocation.
    • CommentAuthorKitty
    • CommentTimeJan 13th 2011
     
    Thanks bluedaze. Charlotte, the difference is that all others have access to the guns. I do not physically live with him, so there is no way for me to sneak it away. After hearing that the only way to have this accomplished was to have him put through testing, and after digesting that info, I realized at this point in time it would not work, because I believe like many others, he could pass the tests. It would be a fruitless activity and just a reason for him to become upset with me, because in his mind, there is nothing wrong with him. If I hear from his friend that he is deteriorating, I will take action.

    We had a very cordial separation up until I, yes I, misplaced the divorce papers his attorney had prepared. I asked that he have her reissue them. I had taken them to the bank to have them notorized, but couldn't remember mailing them or a bill that I had put in my purse. After several weeks I notified him when the check I had written hadn't cleared. Still don't know where those 2 pieces of mail are.

    Long story short, he had taken me to the airport in September, where he proclaimed the airport was closed. Left the car unattended where they will tow it to go in with me to prove to me the airport was closed. Which, of course, it wasn't. He was 30 minutes late in picking me up after my return from NYC, because "he got lost in a parking lot." He got lost twice taking me home, got off on the wrong exit ramp once. Insisted getting back on the highway, even though it would have been quicker to go straight through town.

    When he brought the newly issued divorce papers over, he insisted on driving me to the bank "to make sure his attorney got them this time." Understandably, I did not want to get back into a car with him ever again. He kept insisting, so I finally agreed, but unfortunately I was so upset I got very upset with him. Slammed the car door, let all my anger out from all that had gone wrong. ALL THE WAY TO THE BANK. I guess I had been patient for so long that it just came out. Since then, he has not spoken to me. So contact is very limited. He did answer my email as to the status of our divorce. He will be dropping off the papers which he has had for a week. I asked that he put them in the mail instead. I hope he remembers to do one or the other.
    • CommentAuthorBev*
    • CommentTimeJan 13th 2011
     
    Deb - You pretty much described the way my husband was diagnosed. He had the CT scan, all the vitamin tests (he did have a serious folate and B12 deficiency, so his PCP at first thought his problems were due to that. He was given the several hour-long neuropsychological tests, and the diagnosis of Lewy Body Dementia was first made. After about a year and a half, because of his demeanor in the office and other things I let the doctors know about, they changed it to FTD and put him on Seroquel (he wouldn't have been put on Seroquel if it was Lewy Body). Since then, with dose raised, I've been okay with him. They warned me about the chance of violence, but there really hasn't been any violence. Since you mention the changes in personality came first with memory loss later, I guess that fits the diagnosis of FTD. I actually was hoping it could be Alzheimer's instead because, in my mind, I'm more afraid of the FTD than the Alzheimer's. My doctor didn't agree with me about Alzheimer's.

    Deb, thanks for giving me more confirmation about the FTD.
    •  
      CommentAuthordeb112958
    • CommentTimeJan 13th 2011
     
    Bev,

    When I first noticed the changes he was given all the blood tests, and since he had a history of depression they said he needed his meds updated. He saw his psychiatrist who changed his meds and all it did was shine a brighter light on the personality/behavior changes I had seen. Sent home from work for confusion in June 2008 and was diagnosed in August. Never went back to work.

    A good pamphlet about FTD is available at http://www.nia.nih.gov/Alzheimers/Resources/FTLDs.htm

    You can either order it or download a pdf of it.
    • CommentAuthorGuitarGuy
    • CommentTimeJan 14th 2011 edited
     
    My DW is a woman. She is on 50 mg of Seroquel in the morning and 50 at night. She is a woman, and she is VERY aggressive. Although she mostly gets upset when I have to clean her up change her depends, she has lately been getting upset about wanting to go out. Starts screaming pushing, punching lashing out. She came at me with with a screw driver the other night.

    I usually put things away, but lately she has become so agitated that the aids we have, simply need my help, so I don't ever get to finish anything I'm doing at any particular moment.

    Always having to remember to finish what I started. When she was discharged from the hosptial VNS said she was a two person assist. Even with the aids I have now, I am more exausted then ever. I have a bad cold this week, and I cannot lay down at any point during with day without having to get up to address the aggressive behaviors. I just had to stop this post, because she was asking me something and I can't understand her most of the time since her aphasia is so profound. She then, can be the sweetest person in the whole world. Her old self.

    So I don't buy that woman are not that aggressive. They are. I have the scars to prove it. :>)
  7.  
    GG ask if you can increase the Seroquel. Your wife is still on a low dose.
  8.  
    bluedaze took the words out of my mouth. My husband is on 150mg/day of Seroquel and this week, a gerontologist told me we could go up as high as 300mg/day if needed.

    I agree that some female dementia patients can be aggressive; I think it is just less common than in the males. So sorry to hear what you are going through.
    • CommentAuthorGuitarGuy
    • CommentTimeJan 14th 2011
     
    Bluedaze,

    To make a long story short, I called her neuro and asked to have it increased. I asked them to call me back. They didn't. I had to make an appointment, which I did, or they won't increase the dosage.
    • CommentAuthorGuitarGuy
    • CommentTimeJan 14th 2011 edited
     
    Marliynin,

    My DW was on 200 MG of seroquel back in aug/sept. 50 mg every six hours.

    I noticed that her legs were swollen and made an appointment to have her checked out. On the way, she had a fainting episode in the car. I took her to the ER. Ultrasound showed she had DVT in both legs. They ordered a CT scan with contrast. I had to help keep her calm during the test. They found a PE.

    I told the doctors that I had read that Seroqeul can be a cause of blood clots. The doctor asked me in a quite derisive tone, "In what medical journal did you read that?". I didn't remember, but I told him I'd check and let them know the next day. Next day I told him I'd read it in JAMA. It was study that showed a slight risk of getting clots after being on seroquel. I was just very concerned about the off-label use of seroquel that I thought I'd just ask because I was concerned. He's the doctor, let him tell me that I'm way off base and that the chance of getting clots is so slim that it isn't something I need to worry about. So, they decided to stop the seroquel.

    Her PCP prescribed Risperadol. After 3 days, she couldn't walk. Back to the hospital. Her CPK level was off the charts. In the hospital over a week. She was unresponsive for a couple of days. They put a feeding tube in her. They screwed it up 3 times before they got it right.


    It was then they decided to take her off Aricept and Namenda. They started her on Seroquel again. Mind you, this is the same hospital and the same staff.


    I kept hoping my DW would not need these meds. And I have tried to try and calm her down and did all of the things you can do before these medications are needed. Nothing much worked.


    My DW is now very agitated in the AM. Even after I struggle to get her to eat and take her meds. Even with the Aid, it is very difficult. Plus, I'm trying to work while all of this is going on.

    I'm not even close to thinking of giving up, but it is very very hard. I keep thinking there must be something else I can do.

    I spoke to the woman at the neuro's office about what was going on and she said he couldn't see her until March. I told her that was unacceptable and I will try to find a doctor who will actually treat my wife. They called back and I got Jan. 24. Still, I am not impressed with this guy. We are seeing him because he is affiliated with the hospital my DW was in. The neuro at Columbia Univ. was SO much better, but it is a trip for my DW, that I wanted to find someone close by. This will be the last time we see him. I have a lead on another local Neuro who I have been told is on the best in the area. Heard that before. I am just so frustrated that there is really nothing we can do, but inside I feel that I, the doctors and the whole damned medical profession is missing something. At the very least, they should care enough to see you when you call them in a panic. The woman was actually telling me all her problems with making appointments and oh he's only in a couple of days a week. I'm am dealing with an impossible illness and an ineffectual medical system. Good grief already!!!!
  9.  
    GG reading your posts makes me relieved that my/our struggle is over.
    • CommentAuthorBev*
    • CommentTimeJan 14th 2011
     
    And, I feel very fortunate not to be going through what you're going through, GG -- yet.
  10.  
    GG--it sounds to me like your first priority needs to be, as you said, to find a responsive doctor for your wife. Perhaps other members of this website, who are in the NY area, would be willing to email you with names of doctors that have helped their LO's. Managing agitation is tricky, and I think personal recommendatons mean a lot when it comes to physicians.
    • CommentAuthorGuitarGuy
    • CommentTimeJan 14th 2011
     
    I can certainly understand both of your viewpoints.


    Just had to call the doctor since her right knee seems to be hurting her (she had two knee surgeries about 8 years ago). The knee is swollen. She paces a lot.
    • CommentAuthorLFL
    • CommentTimeJan 14th 2011
     
    GG, well what do we spouses know vs the "learned professional community"??? When DH's neuro put him on Namenda, I exopressed concerns because w/o Namenda DH was already violent and I was concerned that Namenda would increase his violence. We had quite a heated discussion and he shoved the PDR in my face and said based on the studies, the likelihood of Namenda increasing his anger/violence was negligible. Well guess what, 2 weeks later it made him paranoid, delusional and escalated his violence to physically hitting me in the head resulting in 1 month admission into a psych hospital. I wrote him a letter after our crisis and all he had to say was he was sure I took the necessary measures (calling the police as he was trying to kill me) that I thought were appropriate at the time. This from the same doctor that knew DH was physically aggressive who suggested a "code word" to deescalated his agitation (like he could remember it) or the use of pepper pray if the code word didn't work.

    They shouldn't be allowed to practice.
    • CommentAuthordivvi*
    • CommentTimeJan 14th 2011
     
    sad that so many drs havent a clue. its my own opinion after all these years that once the diagnosis is given using all the best technology afforded, then you dont have to be very picky about a dr who can administer drugs. its much more important during the journey to have one who will work with you and try to help rather than hinder. and yes they can be hard to find. i was lucky and found a neuro who had double licenses also in phychiatry. after diagnosis the second degree probably helped more than the neurology one. he never failed to ask what can he do to make things easier, how am i doing, and if i need anything to call.
    its what we all need to hear. this disease cant be cured only handled.
    •  
      CommentAuthordeb112958
    • CommentTimeJan 14th 2011
     
    I agree with divvi--so sad that doctors don't have a clue. I guess we are lucky that the neurologist my husband's pcp referred us to has been helpful. When my husband sees the neuro, one of the first questions the neuro will ask ME is if I have ever felt afraid. He is very much into quality of life over quantity and will help me out as much as he can. My husband also sees a psychiatrist who has been my husband's doctor since before FTD. It's nice to have a doctor who knows what my husband was like BEFORE.
    • CommentAuthorFayeBay*
    • CommentTimeJan 14th 2011 edited
     
    GG,
    You are absolutely right