My DO is in midstage FTD. His behavior has always been his biggest problem. Although he is now on Seroquel 50 mg in am, 100 at lunch and 100 at bedtime, he still has rages filled with vile language. I was told that 300mg is the limit for this drug, so I guess we'll soon face additional meds or a complete change. Recently he has not been willing to take trips (even short ones) and if we do get in the car for a family visit, "Grandparent's Day" or even church, he won't get out of the car, claiming fatigue and needing to sleep. One of the first rages he ever had was leaving for a planned trip to visit my mom. Suddenly deciding he was well enough to stay home for 2 days. He truly believes this even when he just forgot his meds!! I no longer can leave him alone, in spite of everyone's belief that he is so normal??? Is it possible for any of you to share your experiences with your FTD spouse that are similar to these. Any tricks of the trade you've developed.
Hopefully Bluedaze will be along to share her story. Her husband was one of the worst rage cases ever seen. I think it takes a lot of medication trial and error to come up with something that works.
Also, is your husband on Exelon, Aricept, or Namenda? Exelon and Aricept are not recommended for FTD. An aquaintance of mine had a terrible time with her husband's FTD rages. When they stopped the Exelon, he calmed down. Different medications affect different people in different ways.
Hi Jean-here I am. FTD is dementia on steroids. My husbands's rages were legion. Never directed at me he none the less had three non-voluntary psych admits. He escaped from what would have been very secure facilities for most folks. There came a point when a double locked very secure dementia facility said they would not keep him unless I hired a one on one aide for him-which I did. Many medication regimens were tried with little relief of symptoms. I had hit the wall. With help from a medical friend (I am an RN) and a psych nurse who agreed to monitor him I strong armed his doctor to prescribe a tremendous dose of Seroquel. In our state it is illegal to chemically restrain a patient-you cannot even force them to accept treatment...It was assumed that he would sleep for days while the drug in those doses took effect. At first it didn't seem to even touch him. Eventually he did calm down and the doseage was reduced. By that time he no longer knew who I was or even who he was. Ours was a worst case scenerio. I almost didn't respond as I didn't want to have to relive this experience. If you have specific questions I will be glad to help.
Bluedaze....I am sorry that this post has made you go back to those terrible times. I am alone in this battle, with my adult children helping where they can, but fully believing that this is their "dad's disease". I sometimes feel they look at my anxious conversations as a bid for attention. Nothing can be further from the truth. His rages are solely aimed at me.
Thanks for your response also, Joan. I've posted before, citing the huge amount of DO's meds as a reason the doc's were reluctant to add any more to the stew. It took months for them to initiate Seroquel. He started on Aricept and then eventually Namenda when he was first diagnosed as having AD. He had no side effects. Almost a year later the rages began that lead to his FTD dx. His health has been further compromised by a severe head injury in 1981.
His remaining meds are: Doxycycline, Rifampin (for osteomyelitis),Celebrex,Lipitor,Nortriptyline (Chronic pain), Cymbalta, Meclazine for nausea/vomiting, Lyrica, which was recently stopped. His Neuro psych doc recommended he stay on namenda. I live in a state of hyper vigilence...waiting for another "incident".
jean-carry a charged cell phone with you at all times. Advise the police of the situation so that if the need arrives they will believe you. Get your own credit card and let your bank know the situation. If possible set up your own checking account. You have us now-so you are not alone.
jean, my dh was diagnosed with bvFTD 2 years ago and went through anger and aggression towards me, so I know how you feel. He too was in a psych hospital 2 times for med adjustment to deal with aggression. I truly believe the Namenda was responsible for the first major agression incident. He is currently on Neuorontin, Seroquel (350 mgs/day) and 1 clonopin in the afternoon. When his dr recommended increasing the seroquel when he became aggitated earlier this year (225 mgs to 300 mgs, to 350 mgs) I asked him if that was too much and would he be able to function. He commented that drs prescribe up to 800 mgs for severely out of control patients (generally not dementia patients) and he was comfortable with prescribing up to 400 mgs/day if dh needed it. DH is functional, dresees himself, eats well, can hold a short conversation and I've not seen any negative effects of the increased seroquel.
So much valuable information.....thanks so much. I'm assuming not all the docs are aware or willing to address this frightening dementia with higher doses of meds. LFL, I am amazed that your DO is still functioning at a high level given his meds. I will have another conversation with our M.D. Bluedaze, what's still left to do is visit the police, and speak to the bank. DO was VP at our bank until accident in '81. All considered him a very easy going, friendly guy. It would be shocking for them to see this dementia behavior. I am so sorry for your awful experiences, but am grateful you are willing to share.
Jean, My husband has FTD also, and periodically goes thru rages..all aimed at me. He is now on Hospice, and the nurse changed his meds....50 mg of Seroquel at noon, 2 haloperidol (Haldol?) 1 mg. mid afternoon, 3 -50 mg seroquel at dinner, 2 -50 mg Trazodone before bedtime ( around 7:00). I feel fortunate he is willing to take all of this with no problem (yet). We haven't had another outburst since adding the Haldol...doesn't seem to be any more of a zombie than before...lays down most of the day and has for a long time. Different strokes, I guess.
jean is your husband still driving? If so copy his license and auto plate number. My husband took off and was missing for almost two days. Having that info helped find him. This was after his license had been pulled. That's another story. Ask questions and we will be here for you. I did e-mail you.
bluedaze....no my husband is no longer driving. Many awful days and nights trying to resolve that. I sleep alone with my keys, credit card,and charged cell phone. Cold comfort for my senior years. Have any of you experienced the resistance that my husband has to family visits or trips? He has also recently experienced 2 hallucinations involving me calling from work to tell him I was leaving him. He was very angry, wanting me to leave the house. I went back to a bedroom and closed the door. He kept his anger all evening and into the am.
jean, more seroquel will help with the hallucinations. DH was previously on Ativan and Haldol before the seroquel. Neither had lasting impact on his anger or aggression. It was explained to me that both Ativan and Haldol metabolize and don't stay in the body and do not create a cumulative effect (like seroquel). So they work for a period of time during the day and their efficacy diminishes over time (w/i 8 hours). But it truly depends on the individual's chemistry.
Jean, my Jim had FTD, but only had a short period of increase anger. With him it was impatience/constanly aggravation. Seroquel, paxil, ativan all helped keep him in control. He also was very depressed and suicidal throughout. Trazadone gave him terribly vivid dreams, we had to switch that to ambien. As the dr told us the good news was that he didn't have Alz. The bad news was that he had FTD. He described it as Alz on Speed. Jim died 13 mos after his dx, three yrs after his severe depression and anxiety started. Hope this helps, Arms around, Susan *
My husband has FTD and did not show anger, he was just very agitated and restless constantly. He would pace for hours and go days without sleep. He also has a muscle disease and is now confined to a wheelchair but is still restless.
My husband has bvFTD and does not have the anger and aggression. Not all FTD patients have the anger, etc. He does have the agitation and restlessness. He sleeps well but paces almost all day and will even eat while pacing somedays. He is on a low dose of seroquel -- He takes seroquel twice a day (25mg each) but I have permission from the doctor to go up to four pills a day if needed. He also takes cymbalta (an antidepressant), namenda and aricept. Not all FTD patients can handle aricept but some do.
I've heard from the doctor re LO's Seroquel increase. His labs all within normal ranges, so we can add another 50mg. We've had a difficult week, so I'm hoping for some effectiveness.
Jean,my husband was on cymbalta for a year,his anger got worse ,he was belligerent with everyone,I hated to take him anywhere.Talked to the children about placing him.His Dr. retired and the new Dr. took him off the cymbalta and put him on Zoloft. the change was immediate,he became happy and friendly.Neighbors comment on how happy he is.He is also on namenda and aricept.He sleeps well,very seldom loses his temper. I call Zoloft my miracle.Even though I'm not taking it,it has saved my sanity.
yhouniey, my DH is also on the generic Zoloft - Sertraline. It has also worked miracles! Saved my sanity also. Just took him off Aricept and Namenda about a month ago - see no change at all. He also sleeps well - most nights in bed by 6 or 7 p.m and sleeps until 6-7 the next morning, with maybe one trip to the bathroom.
Our doctor is currently removing nortryptyline (elavil) from his longstanding night meds. This was being used for his chronic pain. I'll certainly question the zoloft next visit. Other than the elavil most all his meds came after his horrible rages. I have to remind myself that his still angry temperment is nothing compared to the awful rages. It sure helps to hear other things that work. Thanks