My husband cries sometimes too. I laid a new kitchen floor over two days this week and he was very upset during that time. He kept asking how to do it. He wanted to help but didn't know how to do it. He cried while asking me. I told him he could help me move the appliances, etc. That seemed to calm him a little bit. I was surprised he took not being able to do the floor so hard because even before the FTD he would not have done it. He always worked so much that I learned to do a lot of the stuff at home myself. Nothing would have gotten done if I had to wait for him to find the time with his schedule and he never was a handy man :)
It's hard to see such a strong man who only cared about taking care of his family having such a hard time. He is in early stages but his short term memory is very bad and he does have a hard time finishing anything he starts. He is quite childlike in most ways and I have been lucky with not having to deal with aggression.
Deb, you're lucky (as I am) that you learned to do the household maintenance stuff without him. If you're also the money manager, you can come with what's to come much more easily. My husband's VERY short term memory (as in, remembering to grab his walker before he starts trying to walk around the house, or remembering what he wanted to ask when he started a sentence) is shot, but there's a lot of long term memory there that, with occasional help remembering words when he gets stuck, he can come up with.
Please add cs to list of LO with FTD. Thanks Deb112958...sorry I haven't made contact with you via e-mail. I'm trying to work more hours so I don't lose my job. You've been on my mind and I will try to touch base with you soon. cs
My husband is already in a privat assisted living home. Although something was up 3 or more years ago, his diagnosis of FTD or Semantic Dementia was not officially diagnosed until June of 2007. His deterioration has been rapid..since Christmas he has had more trouble dressing, requires more cueing. He is on Risperadol (anti-psychotic) because his rages are terrible. We tried taking the dose down, and his anger came back, but he became a bit more lucid. He also has these whole body "lurches". Even with the risperadol my last two visits ( i visit every day) he has seemed to be angry with me. Of course I can't figure out what since his communication is very limited.
His "geriatrician" doesn't see the need to visit with my husband. I feel that he isn't getting the attention...it seems with FTD and probably with AD, the Dr's just let things happen. I read that some of you have had a "stage" defined. What is this? No one has ever mentioned stages wrt to FTD.
I just read this whole discussion. Jim is FTD only as far as we know. He has been taking Paxil since early fall, ativan since late fall, trazadone for a year, Aricept for 3 weeks, (not sure it's helping) and he just started on Adderall this week. We were told the Adderall would help him focus. (our adhd grandson is on it) He did well for a couple of days, then today the side effects hit, he couldn't nap, got anxious, had palpatations and his tremors were worse. I am trying a 1/2 dose again, and if it doesn't help, I'll stop it. What do you all think. No one has mentioned ANY of the meds you have all mentioned ??????
I was told that it takes about three or four weeks for Aricept to kick in...and they wouldn't increase it during shorter periods. Aricept didn't affect his behavior all that much but I was told that it is an enzyme blocker that works by restoring the balance of natural substances (neurotransmitters) in the brain. It supposedly also works against the formation of the Ameloid Plaque that forms in the brain. He's taken it for four or five years,... and I cannot see any improvements whatsoever ...not anymore...but it is part of the program, so I keep giving it to him. What would happen if I stopped it altogether...I don't know. What's one more pill. There will come a time, however, that I will look at all the medications again...with a different look, if you get what I mean.
Adderall is similar in its chemical makeup to methamphetamine, which is nasty stuff. My grandson is on Adderall and I am totally against it. His other grandparents, whom he lives with, would rather drug him than take corrective measures like diet and counseling. The side effects you are listing are common, especially when given to adults.
IMO - I would not use it due to the effects it has on the brain.
I am wondering about my HB. He was diagnosed with amnesic MCI. The MRI showed frontal lobe shrinkage - unknown how long that has been that way. Of course FTD is in the back of my mind. In the last couple weeks I notice him tickling our 3 year old granddaughter excessively - I have had to tell him to stop. The other day he came in while I was talking to my sister (we live in our RV parked on her property) - she was still in bed. She was talking about how her feet are now tickelish (I had just tickled them) when they never have been. HB came in and overheard, so went under her covers trying to tickle her feet and legs. It really bothered me. IN the past he never would have done anything like this.
With me he tries to tickle my feet and much more touch. At first it was just massaging my shoulders which was nice but strange since he would never do it in our 37 years of marriage. His personality changes are just weirding me out. His next neurologist appointment is in July. If this behavior keeps up, I am getting fearful of taking the workamper job we have for the summer.
Charlotte, please be careful. I worry about all the contact he would have with campers. Having been the wife of a campground manager, I would be cautious about all the close contact and the libability you could end up with. You would need to be with him, you probably should have someone with him all the time to protect others, especially since it does not seem to matter whether it is an adult of child. This disease sucks!
Jim's wife - even though we have signed contract's, if as the time gets closer this behavior increases or I see other behavior showing he has impulse control, as much as we need the income I will not hesitate to cancel.
I asked my sister to let me know if he showed exhibit any more incidents like that. She saw nothing wrong with it - but then I asked her if in all the years you have known him has he ever acted like that? If she had been on top of the bed it would have been different, but she wasn't. She could see where I was coming from. She tried to bring up the fact some of her deceased husband's friends would act like that. They may have but we are dealing with something else here. We had a dirty old uncle that sexually molested all of us girls except my youngest sister - I would intervene and take it to protect her, something my sister's or mom would not do for me.
I think she is maybe comprehending the reality of what I am facing. Yes, our mom had senior dementia, her husband I some towards the end of his illness (mayby VD since he had a stroke a few years before), but this is totally different. IMO
I agree FTD sucks. Today my husband went up to the store about a block from our house and the police ended up bringing him home. He was talking to kids and made people uncomfortable so the store manager called the police. He was a bit verbally combative with them as he didn't think he had done anything wrong. In a way I'm glad that this happened before anything bad had occurred (but also upset at the same time). I spoke with the officers and they said that they would make a report regarding the FTD and place him in their caution file so that if they come in contact again with him the officers will know he has a disease. They also took our home phone number and my cellphone number. They were very kind about it. Now though it seems I cannot let him go anywhere by himself and he is having a hard time understanding why. He likes to go for walks but now I'm afraid he'll end up at a store and get into trouble again.
He takes .5 mg of respirdal daily but I'm going to call his doctor tomorrow to see if I can either raise it to combat his antsiness or see if he has any other suggestions. He's not aggressive or mean but can be very stubborn about wanting to go someplace.
A neighbor called the police when husband caused a scene. I wish I had known then to give the police a heads up about this damned disease. You newbies are fortunate to be able to learn from our challenges. Somehow we do get through this.
My DH and I met with his new geriatric primary care at the VA today. I liked him, Jim, not liking change, did not :o) Something I found out during our talk with the dr is that Jim has begun losing the sensation of needing to urinate and has been have very small accidents for awhile. I was shocked. When does this ususally begin? He drove me crazy in the car because he even had trouble reading the Mapquest directions! He is changing every day, eating almost obsessively, confused, etc. The dr wants us to increase his Aricept to 10mg from 5. So we will see.
Absolutely!..Jim's wife.... Bluedaze is absolutely correct. I can't tell you what to say if he insists on the increase. 10 MG is off label if taken twice a day, as my husband does...but he does not have FTD. Be prepared for a "defensive response!" and hang in there!
DH was on Aricept for over a year and he is FTD. Evidently the Depakote and Risperdal have been keeping aggression and inappropriate behavior at bay. Has been having trouble with Sundowning big time. He is now on Namenda and I am taking the Aricept down slowly with neuro's knowledge. Seems to be working OK.
I spoke with the Dr and we are stopping the 5 mg of Aricept for a week to see what happens. I do not think I will put him back on it. He mentioned Seraquil (sp) Any experiences.????
Seroquel has been great for us. DH has been on 50 mg 2 x day, which is not a large dose, and it has taken the raw edges of of his temperment. Still has some explosions, but not 24/7. more like several times a week..at most.
Today has been a rough day. For some reason my husband has been fixated on apologizing to me for his whole life and that is brain is "shrinking" as he puts it. I have tried all day to calm his fears but to no avail. He goes from giggling about a song and wanting me to dance with him to crying about his brain and how is he supposed to deal with it. This is the first time since his diagnosis last year that he has even mentioned he has a problem. Even talked about is memory disappearing and what is he to do.
He has been super antsy for the last few days (even had the police bring him home on Sunday--see previous post), so I called his neuro and he suggested I stop his risperdal for a few days and see if that is doing the reverse of what it should. He has had no aggression so I am giving it a try. This is the first day without it and I don't know if that is the problem. The doctor said it would take about 4 days to get the drug out of his system.
I'm living with a big 5 year old right now and having a real hard time dealing with his behaviors. Tonight for the first time I'm going to take the keys out of the keyed deadbolts because he has started to leave the house before I can even get out of bed. He doesn't get lost but I'm afraid he's going to go into the grocery store that is about a block from us and get into trouble again. I don't need anymore police.
You can vent anytime. We all learn from each other's experiences. Does anyone have any experience with bad dreams and nightmares, talking during sleep? Thankfully and sadly I bought a twin bed for Jim yesterday, due to his agressive dreams and the three incidences of him "attacking" me in his sleep. I hate looking at it but it is necessary and our neuro insisted as did my therapist. I know its for the best, but I HATE not having him next to me. Anyway, back to the dreaming, any thoughts???? He takes Trazadone, 100 mg at bedtme.
Aggressive dreams are REM Sleep Behavior Disorder--very common with Lewy Body Dementia. You do need to protect yourself. http://web.indstate.edu/thcme/anderson/NCR.html gives a fairly technical survey. The standard treatment is clonazepam. I have read that clonazepam plus melatonin works even better. It makes it possible for me to share a room with my husband when we travel.
Thanks Pam, I've just read that Trazadone causes violent nightmares in FTD patients! It's a miracle that he hasn't really hurt me during this last year! Doesn't just figure that I learn this the day after I spend money on a separate bed for him, I learn this, ?????? I know I will need it eventually, it's just a little denial creeping in.
Yes we do, what a mess, I had to try and explain to Jim that with FTD it is all trial and error. The poor guy was so confused. Saturday his sister and brother-in-law are flying here to Maine from MN. I know I will get a break with them here. They are terrific. His brother from Louisiana will be out in mid April Not sure about the brother from IL, he was out last summer when we thought Jim only had deep depression and anxiety, NOT.
My husband's family (two brothers, one sister and brother in law) are coming to visit this weekend also. I know that I will surely break down while they are here also. They are wonderful and realize what we are going through so when they are around I often feel the need to share my grief.
That may be good for you ehamilton, to get it out of your system. Too often we don't have someone to unburden ourselves to. Here, it seems to make the kids uncomfortable and they are in their 40's.
Imohr, I know what you mean. My daughters and step son love their father and step-father dearly but they are very uncomfortable around him and find it easier to call on the phone and ask about him than to actually visit in person and I feel like I have to be strong for them. With his brothers and sisters, I know that I can "let it all hang out" and they will understand.
Update on the Aricept and Trazadone = Off Aricept, much better, for awhile, getting grumpy, moody again. Trazadone has been cut down to 50 mg from 100 mg and Ambien has been added. No more aggressive, violent dreams. On occassion he needs a small dose of Ativan for his nighttime anxiety. We see the dr on 4/8 and a first visit with a Geriatric Psychiatrist. I will ask about the Seraquel.
Jim was telling me today that while all of our friends were at our house for our Wedding Vow Renewal, that at times he felt as though he were detached from us all, like he wasn't with us, but watching from outside. He is also complaining alot of feeling unsteady and having muscle stiffness. I understand that the unsteady walking and muscle stiffness are FTD symptoms, but what about the "detachment?" Any thoughts?????
I don't know if it is symptom of FTD, but when my husband is in a social setting he has no idea what is going on. I think all the talking & noise run together for him. Even when someone speaks to him, he will not answer until I get his attention.
In talking with my therapist today she told me that the feeling of detachment can come from extreme stress. This makes sense because Jim was under a whole lot of stress trying to get through the day and all the company. Our lives will be less complicated in days to come, this is my new goal :o)
FTD devil reared his ugly head this morning. My basically new washer is leaking, the repairman was due here at 8:00 so I was trying to get my husband out of his t-shirt he wore to bed & into a shirt. I got him a clean shirt & ask him please to change, no response, so I ask him a couple more time (nicely) he looked at me & ripped his shirt down the front....okay. I guess he told me. I took the shirt & threw it in the trash, started fixing his breakfast. He did apologize later, & I accepted it, however, I did tell him it really upset me & it would take me a little while to get over it. Thanks for listening I just needed to tell someone.
Your story is so typical of FTD. No anger or impulse control. The good news is that he recognized he did something wrong and knew enough to apologize. It does take us longer to get over these incidents than it takes them.
Kadee, i am glad you are ok, but if hes ripping his shirt off like that its a definate sign hes dangerously aggitated. when they are caught up in the heat of the moment it can escalate quite unprovoked once enraged. please be careful and keep your distance and have your 'safe' place ready as others do just in case. and a spare key outside !!! divvi
The addition of Seroquel 50 mg in am and 100 in pm has done wonders for his anger and sleep issues. This along with 5mg ambien and small dose of ativan. So far so good.
...............I must add that he honestly doesn't think he has any problems with memory or cognition. The basic screening test didn't turn out well, but he said that was because the woman giving the test wasn't doing it right! Naturally, further testing was refused. His daughter and I are wondering just when we should confront the situation so that maybe appropriate mediction could be started.
Comment Author Starling Comment Time 6 hours ago PrisR, talk to your family doctor. You don't need a neurologist to get medication. Although it was the neurologist who put my husband on the medication, it has been the family doctor who has been controlling the medications for a very long time. Once the diagnosis was completed I also had the family doctor control all blood tests so we didn't do any of them so frequently that the insurance company wouldn't cover them.
It is best to put the patients on the dementia medications as early as possible. Do it now.
PrisR Comment Time 6 hours ago We don't have the same family dr DH saw another dr. at the same practice a few years ago and got into an argument and was kicked out of the practice. So he found another dr. and I recently asked if he was still listed as a patient there. Good news...yes he is, which is good, since another dr. in the meantime has been crossed off his list. Dopn't know if she kicked him out or whether he left. Anyway, his daughter is planning on seeing the one remaining dr. and discussing all this with him. DH hasn't seen this dr. in about 3 years. He's basically so healthy that he seldom has reason to go. It seems that the meds for Frontal Lobe Dementia are different from the AZ ones. I's like him to get the full evaluation at The Memory Center. Wish us luck.
Looking for sandy D. I am interested in your husband's variant of AD because my husband's symptoms started with memory but damage shows to frontal and temporal lobes. Can you give me any more info? Thanks
My husband has the frontal temporal lobe atrophy, greater than normal for age, but has the memory loss. When I asked the neurologist, she says there are no symptoms of FTD so it is EOAD. Initial diagnosis was aMCI, but has progressed.
My husband was dx'd with FTD but the doctor said 50% of the time it is AD; can't tell until an autopsy. My DH has both long term and short term memory loss but also has all the FTD related behaviors. Seroquel has controlled the aggression effectively. Charlotte, see posts above for FTD symptoms.
charlotte John had brain spect done and they said no signs of AD. Do you know if early physiological signs [?] of EOAD are different that AD? He has been diagnosed MCI also because no FTD symptoms but he seems to be getting worse and I didn't think that was supposed to happen for MCI
chrisS, the way it was explained to us was that MCI can be a condition that does not progress or it can progress to a form of dementia. The explanation on the Mayo website is really good.