Hi Everyone... I've posted in the General section on prior occasions. After Neuro psych testing , my husband is now diagnosed with FTD. His is a complex history with left frontal brain trauma in 1981. We have dealt with memory/behavior issues since then. In 2005, his memory became worse and any attempts to test him were unsuccessful, as he adamantly refused, until now. He tested poorly in all sections, and the pre test interview was held with both of us in the room. I found it impossible to be honest about his behavior as d.o. would be very angry for my airing the"dirty laundry" or for"lying" . He has always had a "temper" and now his anger centers on who is going to pay the bills on line. Several months ago he agreed that he was unable, and I took over the job. 2 weeks ago he began taking the bills to his unbelievably disorganized desk. The summary on his test assessment indicates that, given the results, I should continue paying the bills. No one has discussed the results with him. He feels it is me that makes these arbitrary decisions and he is not willing to "let me be the judge" re his abilities. His memory is very very poor, he gets lost on his usual walks, he is incredibly negative and angry, among other symptoms. I would appreciate any input, as I feel our lives are totally out of control. Thanks.... Jean
jean, is your husband on any medication? My husband has FTD but I have been lucky in that I haven't had to deal with agression or anger---just some stubborness. I'm surprised they asked you the questions with him in the room. When my husband had his neuropsych testing I was given questionairres to fill out while he was tested in another room. That way he didn't know what I was saying or that I was even filling out paperwork.
I'm sorry I can't be of more help regarding taking over the finances. I have always done our bill paying so there was no problem there. Maybe some of the others can help you more.
When DH saw the neuropsych back in 2007 he was given 3 3hour tests on 3 consecutive days. I wasn't asked any questions nor was I asked to fill out any forms. DH isn't going to him anymore because the last time we went he wanted DH to take the tests again and DH flatly refused. So the neuropsych spent the time telling us about the time he spent in Florida and his divorce then charged the insurance $177.00! One neuropsych down and out along with the first neurologist we had.
Jean, when our neuropsych test results were ready we had a face-to-face with the 3 of us. DH knows (or should I say Knew) what the neuropsych (NP) told us. DH is now in total denial of his FTD and doesn't believe there is anything wrong with him. See if you can get a meeting of the 3 of you and see if that might help. Lots of good info on this site. Do a search on FTD under topics and comments. Hold on dear, you have a bumpy road ahead of you but we are all on the same path and can help one another. Lots of FTD on this site. So sorry you have the need to be here.
Jean, I wish I had good answers for you..G was DX with FTD over two years ago, and your description pretty much sums up the behavior, but it comes and goes. The nasty bit lasted a long time, but now fluctuates..G is on Prozac and Seroquel since nothing else works for FTD. He has been abusive verbally and a but physically (to date more like an angry toddler hitting out)...that was before Seroquel, but he still expllodes daily out of frustration, I believe......and everything is MY fault. Not a happy picture or future, I'm afraid.
My e-mail is on record if you ever want to vent privately...helps me.
jean, my DH with FTD also had the psycho/neuro testing, 8 hrs. We had a joint interview with the doctor at that time. I was taken aside and told that I was to stop his driving and limit his responsibilities. Which I did. The results of the testing was sent on to our neurologist. DH, our son and I at a separate appointment with his neurologist were told how impared DH really was. This eliminated the anger and resentment towards me and focused it where it belonged, on his doctor that he respects. This was a good thing. DH was told, forcefully, that he must listen to his wife. That I was the one that loved him and cared for him and would do him no harm. We see his neuro every three months for med adjust or advancement diagnosis. I fax any information to be communicated before the appointment time so that we can be on the same page. My advise: Get your doctor involved in his care. Place blame on the doctor or the disease. Work as a team....M
When my husband's results were in from the neuropsych testing, we have a face to face meeting with the doctor. He explained the results to us but my husband didn't really understand or how serious it is. He is not in denial, just doesn't understand the seriousness of what he has. I was crying and my husband asked me why I was crying. The doctor explained very nicely to my husband that I had just been given sad news and it was okay for me to be upset. His neuropsychologist was very helpful to me and did let me know that if my husband's neuro wants him to be retested it would be a much shortened version of the test--not the 6 hour one he had. I was also given his phone number and email address to contact him any time I felt I needed it.
My husband sees the neuro about every 6 months now just for medication adjustment and progression
deb112958 very good comments and reminded me that DH is not really "in denial" as the term may be meant, he honestly cannot comprehend that there is something wrong with him.
Perhaps I posted on the wrong thread. My DH has Alzheimers' according to the neuropsych. We did meet with him after the tests and then went to the neuro who put him Aricept. This neuro acted like he never had time to test or talk and I told our PCP I wasn't impressed with him. He had his nurse call and get us an appoint with a different neuro. He is waaaay better than the first guy. Our first apointment with him took almost 2 hours. He checked everything and I do mean everything. Even a chest X-ray which ended up with a bone density test for DH, turned out DH has Osteoporosis. We go tomorrow to see another doctor and see what he will prescribe and then see the neuro next month. I just realised I keep saying we! But I guess we are in this together. I'm sorry if I gave the impression that DH had FTD.
Jean-I am so sorry that you have to join the ranks of our FTD spouse group. Meds like resperidil and seroquel really help. Between the loss of executive ability and extreme anger you feel like you are walking on eggs all the time.
Jean, My husband also has FTD. He was tested about 4 years ago...or I should say they tried to test him, at the time he was very angry at everyone & walked out of the test before it was completed. Since I had so much trouble with the insurance company paying the $1200 for the test, that we didn't try again. He now is on Lexapro, Namenda, Keppra & Lamictal. Most days he is calm, however, sometimes he is agitated, but, not to the point that I am afraid of him. He is in stage 5-6, each day more towards 6. My husband is not in denial, he knows he has problems, however, he really doesn't know his limitations. I am sorry you are on the devastating journey.
I'm Sorry folks, but people keep posting to my post and my DH does NOT have FTD. I was posting regarding the neuropsych testing. My DH was DX'd with Alzheimers in 2007. As far as I know it has stayed with that diagnosis. I will check with neuro next month to make sure. He is still in the mild stage.
Weejun is correct in stating that it's not denial as WE know it, it is part of the disease. Jim is beginning to deny things that he has done. It is so very difficult. The best thing for Anger that I have found is Seroquel, It is a BLESSING! He now takes 100mg in the morning and at bedtime. The maximum dosage is 1200 mg. so a little goes a long way. Go to the search section above and type in FTD Stages, the list there will help you understand the stages. Tonight I will begin to put a baby gate at waist/chest hight across our bedroom door, as Jim is now wandering at night, and I am sooooo afraid of him falling. I will put the new commode in our bedroom. Our Home Health Aide said today he began to make a sandwhich, stopped, went to the table, sat down with hands folded and stayed there. She finally asked him if he wanted her to help him finish it, he said no, got up and made a turkey, catsup, mayo, mustard, and relish sandwhich????????? Then put pickes in it for good measure. And ATE IT. Gag me. He remembers none of it. Thinks he made a regular turkey sandwhich and "WHY WOULD BECKY SAYS THINGS LIKE THAT"? I will not try and ask him about his behavior again. Things have really changed and are declining quickly again. I have called for a Gould Assesment just to get another opinion. I am worried about his safety and stay with him or have someone with him at every moment now. I also have to put out his clothes or he doesn't dress.
Jean, I'm sorry, this was supposed to be about you and I vented all my fears. Forgive me. Keep in touch, Hugs, Susan
My DH's Dx is FTD but as I understand it all diagnoses are "tenative" at best since autopsy is the only definitive method of being certain. The more I read the more I am convinced that it really doesn't matter what we call it, it is all dementia. Nuff said...
Weejun, I agree with you. We were told the same thing, even my husbands diagnosis is "probable" FTD of the behavioral type as the doctor said no one can be sure until an autopsy is done. All the dementias end up the same way, just the road they take to get there is different.
My husband's diagnosis of FTD is based solely on his MRI. No testing was ever done. He lost his ability to speak before he lost anything else and it is kind of hard to test someone who can't talk. There couldn't do any testing using pictures and pointing because his eye sight is poor from macular degeneration. But it really doesn't make a great deal of difference. He has dementia and knowing the type for sure really doesn't make any difference in the long run.
Edis the diagnosis actually does make a difference as far as the proper meds to use. AD drugs make FTD symptoms worse. Although FTD is not a psych disease the rages respond well to psych drugs.
DH is taking Namenda and the Exelon Patch, having switched from Aricept because of side effects. In his first DX early 2007 the neurologist wasn't sure if it was FTD or AD. The neuropsychologist recommended testing for FTD because his tests indicated decline in frontal lobes so neurologist ordered MRI and PetScan showed no clear evidence of FTD or AD for that matter, his diagnosis in his written report was probable FTD or AD. 2-1/2 years later now his neurologist out here (we moved to another state) says it doesn't really matter which it is as the treatment isn't any differerent This was his response when I asked for a new PetScan.
Doneit's post makes me wonder if and how Exelon might be harming him. (a quick google just brougnht a mention that the anti-cholinestrate drugs could cause agitation in FTD patients, but I have not noticed that.) I thought I had read somewhere that the AD drugs were not recommended for FTD patients but couldn't find anything when we were seeing the neurologist. This particular doctor is relocating and we're now about to begin again with a Memory Center not too far from here, but in the meantime DH is using the patch and taking Namenda which I understand is recommended for FTD though.
DH is 67 and pretty functional most of the time: still driving, cooks, dresses himself, executive functioning DISMAL but I'm not sure what stage he is in. Early 2008 neuropsych tests showed a drop in basic IQ from 97th percentile of population the year before when he was first tested to 66th. I thought that shocking especially since I know it had already fallen before the first test in 2007. He was a brilliant scientist, retired early in summer 2007 after DX. Executive functioning scores were his lowest putting him in the 20th%.
terry, If you haven't already seen it here is a site with great info regarding FTD -- http://memory.ucsf.edu/ftd/ My husband is on aricept and namenda. He has had no problem with either that I can tell. Some FTD patients do have a problem with the drugs but not all. Also, I have seen from another site regarding FTD that quite a few of them are also on the exelon patch and have seen some improvements. As my husband's neuro told me, everyone reacts differently to each drug and as soon as anything negative is noticed we can stop the drugs.
Deb, I spent quite a bit of time on that site and read so much my head boggled and I couldn't remember any details by the time I got to neurologist's office. And I felt so annoyed that I had to do all the research so I could tell him what I think he should know. I did remember that it was good to know whether it is FTD or AD but couldn't remember why so really had to accept for time being his telling me that it basically didn't make any difference. DH is tired right now of the testing since the last one left him feeling so bad - he finished it an hour early - he said it doesn't take as long when you can't answer the questions.
Thanks Doneit, how did they diagnose your DH? I'd love to hear by post or e-mail how others learned and what I might need to know.
I feared from the pre-DX days that it was FTD because his symptoms from about 2003 were behavioral. Our marriage was tanking as he lost empathy, and seemed to just stop "being present" in our relationship. I took it as a sign of laziness that I wasn't a priority enough for him to even engage. I've always been the vivacious (his word) social one and he's always been more introverted (absent minded professor type) so I was so to look for medical reasons for all the changes. The stock phrases, never bringing up anything new, defensiveness, blaming me whenever I would question him about anything he didn't do, all seemed to be an extreme version of his worst qualities. Then he had thyroid surgery and for some time we believed his symptoms were because of that ..........I so remember September 2006 telling a friend, "I don't know whether to hope he's sick or just a rotten husband."
Terry, too bad you and I couldn't have chatted in 06. That was the summer I moved out and filed for divorce. DH had been getting worse and worse, became a total a--. I thought it was just that he had changed and I could not and would not put up with the berating, rude, hateful behavior towards me any longer. After about 4 months we reconciled and shortly after I finally got him back to the neurologist and we got the dementia diagnosis. It's been downhill ever since. I am here because of my marriage vows; I know if the tables were turned he would stay and care for me, so that is what I do for him. I don't have any strong feelings for him one way or another -- he's just somebody I have been assigned to care for. The horrible years leading up to my leaving in 2006 pretty much killed the affection I had for him. We had a wonderful marriage for over 20 years, were each others best friend. Met on a blind date, courted for 3 years and then married. Next month we celebrate wedding anniversary #30. It will be just another day...
Can ya'll see the big "L" on my forehead?? Stands for "loser". First hubby was a horrible cheat, hubby #2 got dementia. There won't be a hubby #3!
weejun and terry...all of the above is very typical for FTD ..our relationship of 50 years was killed about four years ago and can't ever recover...so sad, I feel the same..putting in the time. I hate our life.
Kathi37, so sorry you are on this same lousy trek. I am feeling momentarily better because I just finished eating a huge handful of cashews and drinking a glass of wine. Guess I can't do that 24/7 so will see if there's something more I can do tomorrow.
Jean you started this thread with queries about how to deal with things. There was a recent thread along the lines of financials. Let me see if I can find it and bring it to the top for you and others that might need it.
We will all get through this. We will survive (isn't that a song title??) and just think how strong we'll be when we come out thru the other side after all we've been through.
weejun and terry - you are not alone in your feelings toward your spouse. There is a thread somewhere that deals with those of us that are doing staying even though we our marriages were 'dead'. For me when my hb had his affair and I found out in 1985 it has been more of convenience first for the kids and then cause I didn't want to start over. I think there was something going on back then cause he was diagnosed with 'detached personality disorder' - the reason for his affair with someone much younger. Afterwards about a year our sex life went downhill and I blamed myself - too fat, too old, not pretty, etc. but I know believe it was this horrible disease brewing. Funny that he now shows more emotion than he ever has in the last 38 years! My heart wants to run and not have anything to do with this journey, but I stay because if I left I would be feel guilty for abandoning him and some of my siblings would never let me forget. My heart wants to run because I have already been through so much crap with him and i don't want anymore: if he gets angry, abusive, violent (all of which he has never had) and crappy - I don't want it. I had enough of that growing up.
Oh, Charlotte, thanks for your comments. It feels so nice to have "friends" here that are in the same place. Most days I dream of just crawling in my truck and driving away to ANYWHERE but here. I really think if I outlive DH and this dreadful dementia that is what I'm going to do. Perhaps I'll plot all of ya'll on a map and stop by to give in person hugs to everybody that helped keep me alive on the journey.
Some of my favorite days are those when DH mostly just sleeps. I pretend that I live here alone and sometimes that makes it more bearable.
I know what you mean about feeling guilty if you were to leave. If I left, DH would have to go to a facility and he's just not at that point yet. The kids (1 his, 2 mine) could not take care of him as I do, nor would they want to. Bless his heart, mine breaks to see who he has become. This educated engineer reduced to a guy that reads aloud the signs along the roads as we drive by...
Thanks for all the support everyone. I don't get to the message board as often as I'd like. Jim is on Aricept 20 mg. daily, Namenda 10 mg. 2x day,plus meds for cholesterol, depression, and chronic neuropathic pain. He has done well with both aricept and namenda. His anger is always centered on his reaction to loss of control.....no driving, bill paying etc. Only once was it necessary for me to leave the house when his anger escalated. I foolishly argued about the bill paying. The idea that I can best use, is the idea of a sit down with the neuropsych. doc. He can then redirect this anger and be told how the results of the testing impacts his daily life. (I hope).....Jean
It's tragic how FTD kills a marital relationship. Our spouses seem to function ok to others for a long time. Only we who are with them all the time see the dark side at first. It really hurts. Now that my husband no longer knows who I am and is in a facility for too many reasons I have no feelings left. Sometimes I feel guilty even though it is not my fault-or his.
If you go back to the entries I wrote about 15 months ago you will see me and others saying the same things. No matter what the dx.
Now there's not much aggression or Anger and there's even a bit more lucidity. It has really changed my feelings toward him which makes the groundhog days more bearable.
I, too, with all who have posted on this thread, am in an abusive marriage. I am convinced that dh has FTD. He has always been a very difficult, ornery man, ever since I've known him. Now, I can see signs of dementia, and it appears to me that it's behavioral, ie, ftd. He, too, appears to the outside world as ok, yet if someone is savvy, they can see through him. I could spot him in a minute, both dementia and ornery abusive man, if he were a stranger. It emulates from a person like this, if you know what to look for. I, like the rest of you on this thread I'm sure, can pick them out. I've read on this website that oftentimes the earlier character defects come out even stronger when dementia rears its head.
I, my dear friends, also know where you are all coming from. Been in this FTD thing far too long for anyone to bear. Looking back, I should have seen the signs; aggression, anger, inapropriate behavior. Life seems to have been one long nightmare for at least 10 years. We have been married 46 yrs come October. Known each other for over 48 years. In the beginning we were good. That's what holds me here, marriage vows, guilt, etc. I want to run away rather than handle this, like you. Feelings are numb for him now. It's truly sad to have a life culminate to this.....M
When I look back now I see the FTD starting in 2006. My husband had bladder cancer in 2004 and we put a lot of his behavior changes to the chemo he had (chemo-brain). He had no family history of dementia--no one on either side of his family have had it. So it was quite a shock to have him diagnosed with FTD after many, many tests and then finally the MRI showing atrophy of his frontal lobes.
My husband was dx with AD 3 years ago. He was doing great on Razadyne (?) and Namenda. About 3 mos. ago he seemed to be on a down hill slide. Language getting worse, can't following movie plots, memory worse, fits of anger and just looking off into space for long periods of time. Neuo did an eeg. He told me my DH has been having silent seizures and is getting worse. He also said he may have FTD. He said there is really no way of knowing. The eeg showed a disturbance in the right frontal lobe.
My Dh also goes to the VA. They wanted to do the long mental test and an MRI. The Neuo said, don't do it. There is no need for all this testing. There is nothing that will improve his condition and the medications are limited and he would change the medications if need be, but all this testing is totally not needed.
My question to you all: If your DH got really bad, like doesn't know who you are, just sits, etc., but not bad enough to have to go to nursing home or to have to have daily help, would you stop all medications or not? If not, why?? Why would we want medications to prolong things except for medications to control anger?
to control anger.. and depression.. and pain from arthritis, diabetes, etc.. and to discourage pacing .. and other mood meds.. The possibility exists, though, that the so-called "alzheimers' drugs" like namenda and aricept and excelon, are keeping them high enough above water to not need to go to a facility. As far as meds for cholesterol, probably high blook pressure, etc, then no. Although there was a lot of discussion here about flu vaccines. But divvi, for instance, hasn't given her spouse anything for years! and he's been surviving pretty well until recently, I guess.
If you haven't read the threads about pacemakers, or about non-essential surgery, do. Most of us plan to avoid them like the plague for our spouses.
My husband doesn't know who I am about half the time, just sits most of the time, just finished giving the car-repair scheduler a lengthy and completely incomprehensible discourse about his "research", and is mostly incontinent. But I do still do the namenda...
Just last month DH's primary care physician (PCP) Rx'd some nose drops (to alleviate constantly runny nose while eating) and something to increase appetite (duh, his appetite is great, just can't gain weight) plus Citalopram. DH has refused all three Rx. In the future if he does give us new Rx, I'll research what it is and then make a decision on whether or not to fill. He takes BP and cholesterol Rx plus Trileptal (anti seizure drug) for his trigeminal neuralgia and one regular strength aspirin. If and when he wants to stop taking these pills I won't argue with him.
Janet, maybe we can get by without being labeled as "derailers" if I word it this way :-)
For DH's maybe FTD-related condition of constantly running nose while eating, his PCP prescribed Atrovent Nasal Solution. Drug store substituted Ipratropium 0.06% solution. Doc says to use it about 30 minutes before eating and it should help with the situation. Can't tell you whether or not it works since DH refuses to use it. However, having it on the shelf in the pantry does seem to work as the runny nose is hardly ever present since we bought the Rx -- go figure...
Weejun, love that about the RX sitting on the pantry shelf! Reminds me of when I had a bad cold, so naturally, DH got one too (NOT); I gave him tic-tacs for his "cold" and he got rid of his a long time before I got rid of mine! :-))
I hope I'm not breaking a rule here, but now that I'm trying to post more consistently I'm losing track of where I've posted what. So, I'm copying this post I wrote late last night on the Father's Day thread. I should have put it on here. A lot of the time I'm aggravated and irritated but sometimes not, there are still those good times, like Sunday as I wrote below:
I meant to post this earlier. We had the most wonderful day yesterday, best I can remember in at least a year. DH and I drove up to the Buffalo River National Park, about an hour from here, saw the most awesome limestone bluffs looking like they had been dramatically painted with the various minerals over the years and the clearest water, gorgeous wildflowers. A perfect day. I was holding my breath until he went to sleep because usually a good time will be followed by some sort of tantrum or attack. It was close last night when he couldn't find the little box he keeps his hearing aid batteries in (sheezzzz....don't hearing problems just compound everything!), but yippee for me I knew where they were and so he managed to get to sleep before a tantrum. Whew!
But this afternoon he complained of not feeling well. I didn't pay much attention as he says that a lot usually just if he's tired or doesn't want to do something. But he went to bed early complaining of nausea (not that he could remember the word but I figured out what he meant). I tried to get him to drink as he doesn't take in enough water and I felt he might be dehydrated but he didn't want to or just said he already did and then that he couldn't swallow when what he meant was that he didn't think he could keep it down. (My sister's a nurse and said it could also have been the heat - it's awful here this week.)
Still feeling the effects of yesterday, I was really sympathetic to him and offered to get him whatever he wanted, etc. Then he started to cry. (haven't seen much of that since the early days) And the sweetest/saddest thing was one of our Bichons Charlie was sitting at the foot of his bed and when he started to cry, Charlie rushed up to his face and started licking him (he's not a licker usually). Oh, that got to me. So, I don't know what it was. He immediately said, "Do you think it's the Exelon?" No matter what his symptom of the moment is he blames it on a drug. "No, I said, but why don't you take off the patch just in case." So, I'm so grateful for yesterday, but sometimes when things feel really good (which is rare so not a frequent problem) I get very worried about how bad I'm going to feel when those moments are not at all possible anymore. When he's acting like a jerk a lot of the time I sometimes think it might be easier later, but yesterday I was really dreading the inevitable decline.
Update for DH today. He seems very very tired, didn't put on the patch today, but he's not nauseous or wobbly as he said last night. He's going to Chapel Hill to visit his sister on Thursday for 10 WHOLE DAYS which he's looking forward to and so am I. This will be the first time I've had much time in this mostly renovated house by myself. I can't wait to get some work done here. 10 days. 10 days. Well 8 subtracting taking him to airport and picking him up, but still...I think this along with switching from Lexapro to Cymbalta is going to do wonders.
Oh my gosh, I just read back over this whole thread. I've responded with profound and often witty posts to each of you in my head but by the time my fingers hit the keyboard I had a splitting headache and there were too many thoughts to keep straight and I lost track of what was what and who was who. But thank you all so much for all you've contributed to this thread. It's helping me a lot.
I wish I could make a big pitcher of Margaritas and pour some very salted glasses all around maybe while we're all sitting in front of a bonfire or hanging out in the livingroom in our pajamas having a hell of a pj party.
I live in a resort town. Just google Eureka Springs, AR - maybe I can entice some to COME ON DOWN!
I know what you mean terry. Some have suggested we write what we want on a Word or like document and then copy and paste it here. That way if we hit a wrong key we won't erase everything and also makes it easier to edit. Now, I need to remember to do that myself.
i took my DH off all AD meds, (first razadyne then a few months later namenda) thinking it was giving unwanted side effects. took him off and the side effects continued so it wasnt the meds -during that time his demeanor off the drugs was dramactically improved. the aggitation, aggressiveness and profound pacing-resistance to bathing stopped. he became quite normal in the sense he was with Ad but much more manageable. so neuro and i agreed to keep him off of them. incontinence cropped up along the way but cant be for sure it woulndnt have occured with the meds intact. he also lost some skills but gained others. he is early stage 7 eats/walks/by himself and as i speak 'reading' his tabloid mags. some words but entertains himself. incontinence has worstened over the time but manageable as well. dr says last visit aftroff the meds for 1yr now whatever we are doing continue hes in great shape for the time afflicted with the disease. he had some regression a few wks ago but now for some unknowns is now rebounding after starting up vitamins again b-12etc. he is back to being his happy smiley self. hooligan at times:) if i had known how well he would be without the AD drugs i would have discontinued years earlier. some thrive some go downwind. each is a hit/miss as to if its a good choice = divvi ps if my DH had FTD i would maybe opt off all AD meds and just to anger management if needed.