Can we go back for a moment to Bettyhere's question about when we first noticed signs and/or symptoms? bluedaze and Kathi37 have mentioned that their DH have FTD. they also are mentioning some of the "weird" and "volatile" behavior at quite young ages. I am wondering, with the different forms of dementias out there, is it with just FTD that we see this early behavior or is it also with AD and EOAD?

I'm also wondering how many of you out there are dealing with FTD. Not that this is worse, heaven knows it's all really bad. I just want to know who to ask specific questions about medicines / doctors / treatments (I know there really aren't any) / and other specific FTD questions.

We had a pretty good weekend but twice, may be three times, he came very close to "losing it." He is trying so hard to stop when this happens and he doesn't want to do it in front of the children and grandchildren. We went camping with both of our children and their families. (his idea again.) All five grandchildren and our 4 wheelers and motor cycles. Everytime we take down our wall tent, he has a melt down because "I don't do it right." It happens every single time. I actually put it up and take it down myself from time to time. Then, he was having me hand copy his notes over to time slips for his work. (yes he is still working 40-45 hour weeks out of town with a contractor friend building a house.) First, he got mad that I wasn't spending time on the couch with him, then he got mad that he was working and his time slips were taking me away from him, then he got mad that we went camping because there wasn't enought time to do other things, then he couldn't understand my very clear and specific notes about his pay. (he had asked me to write some notes for his boss about underpay.) so he crumbled up the notes that I had written out and threw them on the floor. When he went to the livingroom and pouted. Then he acted like nothing happened and was so tired.

In the past, I would have either cried, blew up, or pouted myself. Now, I visit quitely with him about why things need to be done and remind him that I am doing it for him. How on earth do we stay so calm these days? I still worry about when the next blow up will be from DH but it does not surprise me when it happens anymore. And I really don't dread it like I use to; I just deal with it.

Mary!! (in Montana)

I went to a councelor three times last month because my DH thinks I need help, of course it is all my fault, right. The councelor and I had a great visit each time and she agreed that there really wasn't much she could do to help me. She told me that I had found great coping skills through this site and that the skills appeared to be working just fine. She told me to call her any time, if I need to talk. She is a Gemini like me, both born on the same day in May three years apart, so I told her if I happen to come to her mind for her to call me. Geminis tend to "get feelings" and are very intutive.

Mary!!

Well, today I called the attorney (waiting for a call back) Called the neurologist (waiting for a call back) Called his GP (general pract) and that was the best news of all. He is signing a paper to send to the state DMV. they will call him in to have his driving skills retested. All I have to do is supply his driver's license number. That's in his wallet. I told the doctor I'd get it and call it in to his office. Getting it may not be easy, but I'm pretty tough and I will get it. If the state tells him he can't drive any more, I feel I'm maybe home free. We'll see. I promise. I'll keep you posted.

Don't want to jump to conclusions here, but sounds like he just had an anti-social personality from the beginning. Volatile tempers, jealously, are red flags that you just don't want to be involved. He might have been amazing, but to me seems like it is amazing that you took all that from the beginning. I am not sitting in judgement, just don't want you to attribute his personality flaws to Ad when it is possible that he just was that way. It's not just a downside, it is something that most people would walk away from.

Jealousy is never love. Don't mistake it.

Dear, beenthere, it sounds like many of us fell in love with people who tended to have volatile personalities. I am finding that the volatile part in my DH's personality is much more apparent with FTD (undiagnosed). Although my DH has had for years what I could term a "volatile" personality, his total "person" is what I fell in love with. I wouldn't have missed it for the world.

I grew up in a highly dysfunctional family. when I met my DH, I finally found someone who would love me no matter what and who I knew would be there for me and protect me no matter what. Knowing this and having not had the most perfect childhood, kept me so happy with this volatile man. Sure, there were rough and tough times. But don't we all have these. I raised my children knowing that life does have its ups and downs. My downs never got so bad that I had to leave. My ups were wonderful.

I hope this makes sense. May be this describes how many of us feel.

Mary!!

I just want to say that I know exactly what you mean about them not wanting to do things. DH and I used to have the biggest arguments because he seemed to never want to participate in outings with me and the kids. I would get so furious and think he didn't want to participate in our lives. It got worse over the years. I was thinking about this the other day, because now I ask him if he wants to go somewhere with us, and usually he'll say ok! Maybe it was a sort of "defensive" mechanism to avoid the struggle caused by the EOAD, but now there's no need to "cover" or compensate or whatever. It's just amazing to think about this now. Your whole perspective changes!

Mary in Montana..FYI there is another forum just for FTD in case you haven't already found it. FTDsupportforum.com..but...it doesn't come close to this group. Just thought you might want to check it out...can never have too much info at this point.

by the by...I used to live in Bozeman..at that point, it's nickname was Boozeville...sorry, not my favorite spot on earth. (:-)

Mary..absolutely..my dad taught there (that's how long ago) then there were 12 bars and 1 grocery store on the main drag! No kidding!

Kitty - No worries - it's easy to make assumptions about the whole story, I know. And communicating this way can be difficult - with face to face you have alot more to go on than just words. I've hit "send" or "post" and then gone "oops" so often I can't tell you.

and Mary is right - there is something about the "volatile" personality thing. I alway have bemoaned the fact that I fall in love with "bad boys" they are just so darned attractive. :-)

My husband was the most alive person I ever knew - he did everything 110%.

Knife under the bed - that's bad.

Mine never was agressive with me until way into AZ - then he pushed me down a couple of times, when I was in his face trying to get him to take his meds. I never had to deal with anything worse than shouting before and I never would have tolerated agression - but with AZ you say to yourself "he's sick." I took some caregiving classes and learned to manipulate the situation rather than confront it and was able to survive for awhile. But we did end up placing him because he got agressive with his caregiver. All the constraints just dissolve. Sigh.

I'm still waiting for the DMV to contact us. We still have his PU. Our oldest son wants to buy it for his 16 year old son. It'll be a nice rig for a kid that age to tool around in. Tomorrow we see an elder attny. I'm kind of nervous. I guess it's because I don't know what to expect.

When my husband's doctor sent in the do not drive because of dementia request, the DMV didn't just ask for his licence to be turned in, they wanted him to take a test. I hid the letter and we just went into AAA and turned the license in. I got lucky. It came on a day when I got the mail.

My husband is probably further alone in the disease than Mawzy's. And I think having the son who is in denial take his father to the DMV is a great idea. When he fails, that will be that.

When we got the letter from DMV to test DH, there was no driving test and no written test that I know of. We were taken to a seprate area & he was taken alone into a private room. He came out w/out his license but w/a photo ID and was OK about the whole thing, he said if he got into an accident we could be wiped out. He was not in denial and still had enough sense to know he was a danger. What a blessing for me & everyone on the highway!

But, Sunshyne is in San Diego, I'm in Los Angeles, we went to an office in nearby Inglewood, all CA. Until today, I always thought someone in that room talked to him to see if he had dementia--which an experienced professional could do under the circumstances. It wouldn't be so easy to fool someone, as they often do, after knowing what his doc said. To be honest, I never asked, DH didn't tell me & we never talked about it. But we all know many can pass both the written & driving tests. I never thought he was given a test, unless it was something like the MMSE, and that, I know, he would fail. Either way, I'm just glad when they are taken off the road in spite of all the anguish it causes them & their families.

He got so angry this a.m. that he ended up saying "I'll be G--- D----- if I'll taked their @#$% test. They can just take this $$%#$W@ license and I'll take a @#$ bus. Well, that sounded like a plan to me. So, with no further words, took him out to the bus stop, we waited 5 minutes, got on the bus, in 10 minutes we got off and walked into the GP's office for his checkup. Told the GP what he thought about the DMV. The GP was very smooth. Wished him the best and to come back in 3 months.

Then he took my BP and guess what. It was high. He told me with a little smile it was probably due to stress. I said "ya' think?" What a guy.

FYI, I'm getting pretty smart at this stuff (joke). I'm finding the less words the better I don't engage in any argument. It's really like it was with the kids were maybe 5 years old. The difference is that he's my husband, not one of my children. Dang! I hate this disease. But, I'm not going to become a victim to it. I'm going to take a leaf out of BigtreeMurphy. Can't wait to get that book.

We came home on the bus--were gone less than one hour (I swear!) and had lunch. Now he's telling me how much $$ he's going to be saving by not driving. He's going to save on gas, insurance, etc. And I'm agreeing all the way! Hope he doesn't forget this by next week when our son is taking him to the DMV to turn in his license.

Mawzy, this all sounds great. I always say that if you pay attention, the disease teaches you as you go along, we CG's have to change and there's no getting around that. And watch that BP, it can lead to things you can't even imagine. Sometimes I thought it would pop out the top of my head like a Texas gusher. It's OK now, but yeah, unrelenting stress takes its toll.

Mawsy,
Glad to hear it is going well (at the moment!). Sometimes it does seem like it is easier than we anticipated.
Wish it were so more often.
PatB

Kadee-I totally understand what you are going through. I used to walk away with embarrassment. Once we even got asked to leave a car dealership. The salesman said there was no way he could please my husband. Once spent a whole day getting thrown out of furniture stores because he got so nasty. I was kinda slow getting the message.

I can't mail it in because he has to sign a document and then have a photo ID made. It looks like a driver's license but can be used when you need to present photo ID. I'm just hoping he doesn't forget and change his mind. Took him to the doctor today and he really vented to the dr. about this. The dr. was great and very supportive. I was so glad of that.

Anyway, we'll find out shortly if he's going to give it up gracefully. If he does, it will be an all time first.

No, this is another son who's taking him. This one is definitely NOT in denial. In fact, when I told him DH has rec'd the letter he said "With any kind of luck, he'll not pass it. We have to get him off the road before he kills himself or someone else." That's his opinion, my opinion and all except the one son. I'm sad for him. H doesn't want to talk to me because he thinks I'm trying to do something unkind to his dad.

My DH has AD and his presented more with apathy and impulsive behavior. He suddenly started gambling 4 years ago and not just a little bit. He also would do weird things. I remember him coming home 2 years ago and telling me he had bought a new camp trailer. I asked him what was wrong with the old one and he said he thought we needed a new one. He told me about it in detail and was picking it up on Monday. When he brought it home, it was not the trailer he described. He said he just got mixed up on which one he bought. I was able to convince him to sign over all his ability to spend money because he was going through soooo much...He now always has money in his pocket but I control how much..He still tries to buy things, not little things either. Fortunately he cannot. The aggitation has just started showing in the last 6 months but I was shocked when he called a complete stranger a mother------er, something I had never heard him say before. Our son was there and nearly passed out..he had never witnessed his father behaving that way. Even with all this, he still can fool most people around him.

bluedaze, the problem is that in part they can turn it on and off. What they can't do is turn it on and keep it on for any length of time. And if they do turn it on, when it goes off, they collapse.

So basically one of the reasons I don't have the denial problem with my daughter and son-in-law is that they stayed here overnight, and when the come back from Honduras, if I'm right and my son-in-law's father also has dementia, they will know that too. They were there for 10 days.

From my journal, but it really belongs here too...

This morning I had one of those memories where you realize that what happened was a sign of dementia. When we lived in California, my husband was turning onto a multi-lane divided road as we came off the highway. And he almost didn't go over to the correct side of the divider. There were 4 lanes of traffic and a left turn lane on both sides of the road, so when you turned, you really had to turn wide.

Did it happen AFTER he got his pacemaker, or BEFORE. I honestly don't know, but I think it was before. I'm looking back and I'm pretty sure he was at an early stage before he got his pacemaker. Like stage 2 or 3 where they can still function and no one realizes that anything is wrong.

I will admit that I made that turn every day going to work. He did it rarely. And it was at night. But it wasn't the first time he had seen the turn. That was the same exit where the airport was, and we had gone there many times. It was the turn we made when we wanted to go to the hotel where we did wine tasting dinners at least 2 or 3 times a year (we would stay overnight and make a weekend out of it).

I'm beginning to recognize that I started doing major navigating for him in the car at least a year or two before we retired and moved. Major navigating included where you make turns. How to get to the back so you can find the parking lots. Etc.

That night we were going out to dinner. Someone had given us a gift certificate to a restaurant we rarely went to. The year after the pacemaker? The year before? I'm not sure, but it definitely was January.

We got a diagnosis years after the pacemaker. It was the accident and dying multiple times AND the pacemaker surgery that gave him Vascular Dementia. Now it was mainly the dying multiple times, so please note that.

Would I go any kind of surgery on a dementia patient? Absolutely not unless there was no choice. A broken hip is a no choice decision, a pacemaker is not. I don't know how sick your husband is, but mine is at the border of stages 5 and 6, and I'm not allowing them to replace the battery when it goes.

At this point I think my husband has had either mini-strokes or mini-heart attacks and the pacemaker has brought him back. At this point it is OK. His quality of life is still pretty good. He goes on his walks. He can still talk to me some of the time. He still wants to go out and buy 5 papers a day and "read" them. When he hits stage 7, it won't be OK that his pacemaker is keeping him alive. I want him to go gently.

You bring up a good point. My husband is early stage 4 and I have tried to discuss with him what he would or would not like done. When it is a good day and he talks about his disease, he is willing to answer those questions. Anyone who suspects their LO has dementia, even though they are not diagnosed should bring up hypothetical questions to discuss and try to get a good sense of their wishes. I think that helps us know if we are doing what they would want...my husband has had 2 heart attacks and at this point he would not want a pacemaker. He does not want anymore Doctors either. He sees his neurologist and his internist. He sees the cardiologist for check-ups. That is about it. He refuses to see the counselor he was seeing and I don't fight him on that. There has to be a limt.

It continues to amaze me when I read these posts daily...we are all living with the same person, just some in different stages. I could easily add comments to every discussion saying..yes, that's what is happening here also. I DO wonder how some of you can be so bloody good about the daily sacrifice, and feel the love you once shared. That is getting more and more difficult for me, and I fear I'm becoming a shrew.

G said today he feels he is failing...first time...and he is so angry that his mind isn't working. Right now it isn't my fault which is a first. He pulled the mouse plug out of his computer, and neither of us know how to reconnect it..zero electronic skills..so he can't do his jigsaw right now. Small defeats. AND, as I mentioned on another string, his new ICD device will just keep working away no matter than he is losing five + pounds a month.