Namenda.........10mg 2xday for just over 3 years Aricept............10mg 1xday for just under 2.5 years Risperadone......1.5mg 2xday Trazadone........50-100mg at night Xanax 0.5mg.......PRN
Summer 2005 DH's symptoms were no longer something to be ignored. Early Sept 2005 a surgery/anesthesia issue sealed the deal and we addressed the post op residual Hell with the PCP.
Starting with Namenda I thought was weird, but that is what the PCP started us with. Being that we were in the midstage (4?) I assume it might have initially helped DH to be more focused, but after a few months he started a decline. The PCP then added Aricept (7 or 8 months later) and wow, he was seemingly much more alert. Could engage in conversation much better. I was quite pleased, but after only around 4 months he had a sharp drop off. At this point his PCP was not pleased with the mini mental results, and witnessing this sharp decline. To her credit she stated she was no longer handling the Neuro related meds and we were referred to the Neuro. One neuro practice in our nearest medical community. Took us almost 6 months to get in, even with a direct physician referral. (*I had called this very neuros office over a year prior, but they told me they did NOT make appts with patients. Since they were the only Neuro office, and in such high demand they accepted patients by direct MD referrals only).
DH started minor delusions and increasing anger issues in summer 2006
Delusions became horrific in summer/fall of 2007, and by Christmas that year he was a scary, mean beast. So out of this world. Various meds were ordered after like depakote, then Klonipen. Prior to those last two was a drug I believe was a tricyclic but I can't remember the name. That's embarrassing. It was an "Old School" med used long ago for schizophrenia, and was also commonly used to treat migraines. Anyway, those were all disasters. Risperdal was ordered on Christmas eve 2007 and it saved our lives. Very low dose (1mg a day) for almost 8 months before increased to 2mg a day. Now at 3 mg per day and DH is just NOT leveling out. The delusions are taking over.
I wondered about the Aricept and Namenda, assuming they have lost any effectiveness. I have heard many times the risks of stopping them by means of losing ground with the progression. Yet I've heard also of people saying they saw a leveling off. I've done things such as change the time aricept was given, from the a.m. to the p.m., and back to a.m. again. I've also tried giving Namenda once a day only (not at same times so I could "TRY" to tell which drug had what effect). I thought Aricept might be causing daytime delusions as an extension of nightmares from the previous night so I changed the aricept to a.m. Then went back to night times when the daytime confusion/delusions ramped up.
Truthfully I don't know which meds are now worthless, but DH is very "unsettled" to quote my DIL who is visiting right now. She notes his shakiness, and appearing fearful.
Well, I guess I'm rambling on with all this cuz I'm at a loss. As you all know I installed the locks so I have less fear of DH disappearing on me, or bugging the neighbors. But he sometimes seems so confused by it. He wakes me up at 2 in the morning to tell me "Hey, the doors don't work. I can't get out." (Well, given that its 2 a.m. when he's telling me this its a good thing they don't work....LOL).
My husband is end stage FTD. Took him off Aricep long ago as it made him worse. He is still on large doses of Seroquel and becomes very aggitated if we lower the dose. He is amost comatose but the rage is still in there waiting to come out. Still on buspar, b/p meds and synthroid.
Have you discussed this with the neurologist? I would suggest making a list of all of his symptoms and have a face to face sit down with the neurologist about all of your concerns.
New Realm - the med question has come up several times in several threads. My husband was in a similar situation. Over the past several months as he has declined, several of the meds have been gradually lowered and discontinued.
He was on Seroquel, Zyprexa, Ativan, Razadyne and they have all been discontinued. I also questioned and had his blood pressure medication discontinued as it is also no longer necessary. The problem with the drugs is that it is not a good idea to adjust more than one at a time as you don't know what the effects will be.
The facility my husband is at reviews each resident's medication quarterly to determine what is still necessary. The philosophy of the place is less medication is better.
Unfortunately, it is often up to the caregiver to start the conversation and question the drugs. My next battle is to work on the depakote being lowered.
As far as the Namenda and Aricept, this one is a tough choice to make and may take many discussions with the doctors. Some people see improvement or stablization of their person on the drugs, some see improvement off them and others see no change. It really depends on how your loved one responds to the medications. The doctor and I have agreed that when my husband is totally wheel chair bound (unable to walk at all anymore without help), that we will then address whether he should remain on the Namenda or not.
Tough decisions!! We're going through a whole new phase with my DW - hallucinations, delusions, combativeness. Trying meds to see what works seems to be trial and error/hit or miss (educated guessing) - it would be nice if there was a "cookbook" answer - but I guess that's the "art" of medicine. I'm almost to a point where I would like to see her hospitalized to get the meds straightened out.
bluedaze - you state that your husband is end stage FTD. I am still confused about the "stages". Is end stage (or any stage) of FTD the same as the stages for alzheimers. Early in my involvement with this group I was advised not to get hung up on stages and none of our doctors has said anything about what stage my husband is in so I am at a loss. He can't speak, has very little motor skills, especially in his hands (can not dress himself, shower or shave himself) is not completely incontinent but has more and more accidents and either sleeps 18 hours a day or 3 hours a day. Takes Namenda and Seroquel. Seroquel is the only one that seemed to really help.
There are threads on the FTD site-- http://ftdsupportforum.com/ regarding the stages of FTD that were compiled by asking members regarding their LOs. They have done stages 1-5. They haven't started on stage 6 or end stage as they call it. You could check it out if your interested
ehamilton, Although we say don't get too hung up on stages - 3, or 4, or 5? By the time they get to six and certainly seven, my impression is there's less doubt. Seven is end-stage, six is just before. There's no WAY you can convince yourself for one minute that they are normal. No WAY that you can expect them to last through the day alone, even in six. By seven, most people seem to be either placing their loved ones or calling in hospice.
eHamilton Hospice is caring for my husband in a dementia facility. He is dependent for all care. On a good day he can feed himself. He is afraid to walk and will soon be wheelchair bound. He babbles a few words Has not known me for years. That to me is end stage.