Was thinking back to a trip my husband & I took to FL. 2005. I wanted to swim with the dolphins. It was great! Then we drove to Key West. Not much there to do, but there was a butterfly exhibit with exotic birds. I thought that was great. The tickets were only about $3.00. I said I would LOVE to see that. My husband said he didn't want to go, I could go in by myself & he would wait for me. I told him half the fun was sharing it. NOPE he would not go in. He said we had already seen butterflies on our honeymoon, and I said, so what, it will be fun again, and this has birds too. NOPE. I didn't speak to him all the way back from Key West to Miami. I couldn't believe he could be so selfish. What the heck, just go in to make me happy. In the days before, we had done all sorts of things together. I thought he was being a total as*.
Then he told me our plane was leaving at such and such a time. o.k., I took his word for it. When we got to the airport, he had totally screwed up the departure time & we ended up hanging around in the airport for 6 hours waiting for the next available flight. I was ticked. (That's putting it mildly.)
Looking back on it, I thought it started with the big confusion episode that made me insist that he get a brain scan. But none of the above was normal for him, the beginning of personality changes.
I just thought of this tonight. I'm sure other things will fall into place as I look back. I don't know what I was thinking to overlook the obvious. Now I've read that after whole brain radiation, even after 6 months, symptoms of cognitive impairment can appear. Well, how was I to know. I'm not looking for any responses, just wanted to put it out there. Seems that you can have your head in the sand for a long time.
It isn't always that we have our heads in the sand. In my husband's case we have this big EVENT. But there was also another big event many years earlier. Now, knowing what I do now, I can look back to the time between the two events and I can seem the early stages of his disease.
He was at stage 2 or 3 for a long time. Maybe a decade. But stage 2 and 3 tend to look nearly normal most of the time. My husband not only could work, he still could learn new things. And design contact lenses with no problem. And convince the FDA that if you combine things that are already approved it is OK to just approve the combination, which no one else had ever managed to do with a small contact lens improvement.
It really is only in hindsight that you see things like not wanting to do things with other people, or go places, or do things that are new or different and recognize that those are strategies to deal with a brain that isn't quite functioning right. That acting badly is also one of those things that when you look back isn't really what that person's norm was.
Val and Starling, I can also look back and see things that were out of character for my DH. Not just a few years ago but as much as 6 or 8 years ago. The incidents were spaced far apart and things looked normal in-between so I forgot about them. It's all so clear now. You know what they say about hindsight. But could we have done anything about it even if we had known?
Did yall see the article about AD in th MSN news today? scientists found that the plaque we so suspected in AD isnt the cause! its sad to hear, hope they setup the research much more- me too, i have been thinking of things in the past to see how far back things may have already been started. we had a couple of incidences where infidelity was an issue and the one time he blurted it out at a most disconcerting timing is now obvious to me, things werent right then. boy did it cause caos and he just didnt get 'why' it upset me so much. now i know why it didnt upset him or how he could reveal something he knew could be detrimental to our marriage. he IS lucky i have a forgiving nature:) if we had any ideas of what lay ahead, divvi
I trace the onset of AD to Christmas/New Year 02/03. He had seemed kind of depressed for a few months leading up to then, and I'd planned a post-Christmas trip to visit his sister who was living in London. The kids stayed with my mom. So I was really looking forward to the trip because we would have time to be alone together and just talk and have the great conversations which really made the marriage for me.
He was a drag the whole time. Touchy when I had to explain things more clearly, cranky about the weather (a little drizzly--no surprise, it was England,) and just generally a downer to be with. But heck, I was in London and tried to enjoy it as much on my own terms as I could. (A prophetic glimpse of what my attitude would have to be for the future.)
So this was really different, because traveling with my husband had been my favorite thing ever for almost 20 years.
Within a year after that trip his brother/business partner and I had begun comparing notes about other types of changes.
But, as we all know, the first signs of brain changes are usually too nebulous to pin down. Most likely, the inefficiency I was seeing several years earlier as he tried to proceed with renovations on our house reflected the onset of trouble.
For me changes could have been going on for years and I never would have paid any attention. My DH has a Phd in astrophysics and has always been my "absent minded professor". It is something that has always been endearing and our friends have commented for years that he never remembers where anything is etc. My first clue was in 2007 when I was at a convention and came home to discover the house was a mess, hadn't taken his pills (for bp & cholesterol) was unkempt and had this strange and vacant look. He carried in a box of beverages and said "where do these go". I was stunned because he was the one who helped me pack them only 5 days before-I actually had to show him where to put them because he didn't understand my directions. I made notes of the event and dropped them off the family MD, they scheduled an appt. did CAT scan and everything came back normal. Probably diagnosis "TIA". Everything seemed back to normal (well not exactly-I kept my diary-but it was little stuff) then in Feb. 2008 he got lost going to the local Walmart, couldn't find it but wouldn't come home so we could go together. I gave him directions telling him to turn where he normally turns to go to work-"I don't know where that is"................well that is the point when I went on line, found a support group and went to the next meeting. They encouraged me to get him analyzed by a local research center in a neighboring town and the rest is history so to speak. As I look back, I can now see incidences where the thought crossed my mind years ago and I dismissed it thinking it was "normal for him".
But I agree with Dazed........nothing could have been done at that point anyway AND personally I am glad I have had the extra years NOT KNOWING. Ignorance is bliss-at least for awhile!
One of the reasons some of our fellow caregivers have spent years trying to get a diagnosis is that they started early looking for one. This set of diseases are hard to diagnose anyway. Starting before late Stage 4 or early Stage 5 is probably almost impossible.
I have decided our journey started at least 6-7 years ago... before he retired. His short term memory has been awful for years, but that was due, I believe , to heavy duty meds he was on for his heart problems before he got his CID device. Then, Mr. Congeniality, started being rude to people and ticking our friends off. Finally told me he had been nice for 60 years and didn't need to be that way any longer....the rest is the trip South and Mr. Nasty took his place.Needless to say, our circle of friends is nearing zero at this point. A couple of long term ones have hung in there, but that's about it.
Very interesting, to hear all the stories of symptoms from years ago. We in our second marriage, so we have only been married for 8 years. My wife has "always" had a few peculiarities that I did not understand, were these early signs of AD?
She is still very capable, I would say a solid Stage 3, she still drives, volunteers at the hospital (yes it is OK as she only hands out coffee in the waiting room). And she is very good (getting better ?) at hiding her problems, by avoiding situations that require capabilities she doesn't have. She even lulls me into thinking she can do more than she can, then I get hit with the reality later.
Her friends have started asking why she doesn't go out with the girls so much any more. She has even cancelled out of some Red Hat events.
I guess we are in the "long Stage 3" and I should enjoy this respite as this is as good as it is going to be.
It is really helpful to hear all the stories of others, whether they are like us, or different. there is always something to learn with this complex affliction.
Dazed, Yes if I had known the TRUTH, which apparently none of the drs. wanted to share with me, I could have hovered over the financial things. I wouldn't have assumed things were o.k. About 6 months before my husband told me there was no money left (WHAT?????) & that he wanted to put the house on the market, he told me we had enough for a very comfortable retirement. So yes, I would have done things very differently. To not inform the spouse in my case, has turned out to be disastrous.
divvi ... interesting, and very disappointing. Although there has always been a question as to whether plaque was a cause or a result. And perhaps other methods for reducing plaque that actually treat what's causing the excess plaque to form will work.
Maybe the problem was that the drug removed ALL the plaque. Some plaque is natural.
Also interesting ... another news article published on the same day, announcing that Phase II results with dimebon have been very promising:
The company is recruiting for two Phase III studies. For one, patients must be on aricept, and for the other, they cannot be on any AD prescription meds.
Yes, Val, I can easily see where early information could have saved you a lot of trouble with finances. I wish you could have known early on. In my case, I have always paid the bills and handled the finances because my DH doesn't like to do those things. He's an outdoor guy all the way. The only thing early diagnosis could have done for us would be to start on Aricept and Namenda sooner. They have really helped. His MMSE score came up 4 points after several weeks on Aricept. It came up 2 more points after Namenda was added.
I am going to say something that many will challenge, but I believe my DH had AD as early as his 20's. He died from AD at 73, so we are talking 50 yrs, a lifetime. Of course I had no idea. I just thought he was a bit quirky and I loved him. I could have understood a brain tumor, maybe, but never a brain disease. But I can look back at things people said, a very mysterious phone call from his foreman at work, when he was maybe 25, telling me to take him to a doc, etc. But I had no idea what the man was talking about and I doubt if he even know himself, except that he must has had a close family member who said and did things a bit off-kilter like DH and then it advanced into dementia. I don't know, but I do know that from the beginning there were 'things' and I just accepted them w/out concern or question. I know a doc who has a 29 y.o. patient w/AD, so it happens. I am just waiting until it comes out that there is a form of AD that even precedes EOAD. Maybe my DH was born w/it, but I cannot believe he would be the only one who had it from the very beginning. Knowing that now, it explains a million things, and makes me wonder what my life w/him would have been like w/out AD--maybe I wouldn't have even married him, he wouldn't have been the sweet quirky guy I so loved.
Betty, I will agree with you. I have spent many hours wondering the same thing about my husband. I'm pretty sure he has FTD. Won't go to the doctor for it and doesn't think he is the problem. I had occasions many years back when I questioned if how he was acting was somehow not normal. He is one month shy of his 55 birthday. I am 51. I have know him since he was 19 and have noticed more and more things happening that cause me concern. He has never been able to handle stress and change isn't good either. He doesn't understand when people do things differently than how he feels things should be done. However, in the last 6 to 8 years, these things along with anger, adjatation, unreasonable expectations of others and cercumstances, unwarrented/unreasonable reactions to happenings, etc. have been occuring more often. in the last 6 months or so I have seen him not be able to count small money bills (although not all the time), asking the same question over and over, asking me to do something (like inviting son and friend camping) and then getting angry with me for ruining our weekend again because I always plan our time away. Oh, and lets not forget the violence. Throwing things, wanting a divorce, etc. He can be the sweetest man some times but that can change in a moment. Absolutely no way to judge what will "set him off."
Yes, I agree that if it is possible for someone to be born with it or get it at a very young age, mine did.
This is interesting. I wish there was more information available about the very early stages.
Betty, may I please ask, does you husband have Alzheimers or FTD or something else?
Betty-very interesting. I remember when DH was in this early 30's a coworker telling me what a b-----d he was. I was shocked. Always the gentleman around me-but horrible to my Mom. Very successful in his carreer but fired from many jobs. I was clueless. This brings us back to "bad behaviour" or brain disease.
Betty, I should have read your post closer the first time. I appologize. I now know that your husband is gone and did have AD. I am very interested in your thoughts about very early onset.
Bluedaze, same with my husband. He would tell me how he had to yell at a co-worked because they were doing something in an incorrect manner, people were always a little bit scared of him, they would wonder what I saw in him with him being so mean and all. As I said previously, could and still can be the sweetest man sometimes (or may be when he wants to be). I know some of it was bad behaviour but I know that there was something else also. Why else would he be able to handle some situations in a good way and then handle the same thing in a bad way then next time. this would explain it.
Mary-do you realize how scarey this is. Do outsiders including those in the medical profession have an inkling as to how early this beast can show itself.
very scarey. expecially when their doctors don't see it, their family doesn't see it, your children think you are making it up, you wonder if you're going nuts, you walk on egg shells hoping they won't "lose it." the list really does go on and on. Lately, he has tried hard to not lose control. We had a really bad episode a couple of months back and I left for about 4 hours. He was so sorry and told me that if he ever asks me to leave or for a divorce not to do it. He asked me to never leave even if he wants me to. With it being so upsetting to us, can you imagin (I am not the worlds best speller) how they must feel trying to keep it all together. I have noticed to glassie eyes in him when he gets tired for a couple of years. When I tried to mention it to the doctor 6 months ago, the doctor (and he is really a good medical doctor) told me not to "buy trouble when there isn't any." Then husband askes me later what I was trying to do, get the doctor to put him on more drugs. Boy was I in trouble.
Yup. I'm pretty sure it is. Won't go to the doctor for it, doesn't have any problems, It is all my problem and if I would do this or wouldn't do that, he wouldn't have any problems.
I did some pretty long and from the gut discussions a few months ago about all his symptions. I am just really glad to know what is going on. I don't have the need to defend myself any more. We used to have some horrible battles because I did not take too well to being blamed for everything. I am figuring out, with the help of you all, to handle things differently and it is making my life easier.
I have to say, I know you should forgive & forget, but despite it probably being his brain, it really HURT me that he would not go into the butterflies with me. All these beautiful butterflies all around you, flying free. How could someone not want to do that, when his wife is begging? How difficult is that to endure for 10 - 15 minutes? I was crushed. Funny, now I would be happy to go in alone.
Mary: Don't feel bad that you misread my post, I am not very sensitive about all of this, just realistic. My DH died 5 yrs ago this month & his biopsy showed definite AD. What has surprised and pleased me is that no one here has challenged my belief that he always had it. It is something I've pretty much kept quiet about, but it is interesting to know that others feel the same way. I'm glad I didn't know, we had a pretty good life, I'm just not sure it was always genuine. I often felt he was looking for someone to give him a script so he'd know what to say or do, and yet, he was brilliant, designed & manufactured things for all the early space shots, etc. Go figure.
Well, Betty, it will be interesting if others have found the same thing. I don't think our judgement is out of whack, when it comes to assessing things in retrospect. (It was your reality, so it was real.) (genuine)
Amazing to me what all these spouses have accomplished in their lives. And the caretakers. Are the people on this site just a bit above the average? I'm starting to wonder. What about all those who have no idea what is going on. I think of my IQ, and how long it took me to figure this out, and it was only with the help of this site. I imagine so many suffering without a clue, thinking their spouse are just getting mean for no reason. Etc.
Do all of you realize we are doing the "why don't they investigate this stuff" deal again? This group really does know more about this disease than the professionals do. And I don't think we have really scratched the surface.
Now I just remembered an episode about 3 years back, never put 2 & 2 together. He was working with something flammable in the basement & "forgot" the pilot light for the furnace was on. There was a big explosion, It sent him flying across the room against a wall. He put out the fire with the fire extinguisher, but told me to call the fire department. There was smoke all over the house & they brought in big fans to get the smoke out. Normally he would have known better. I just assumed it was an oversight. Now I think maybe he wasn't able to think of the consequences. Still thinking......
One of the reasons that I am so pleased to have joined this group is in fact for the "in the trenches knowledge". One thing that I have learned in life is that sometimes the so called professionals have nothing more than book learning. That isn't a bad thing, but without the first hand knowledge, they only know a small piece of the puzzle. I have learned so much here in just the two weeks since I have joined. This group will probably educate and re sculpt the face of information being dispensed for Alzheimer's families.
I don't know the actual number of members on this list, but there certainly are enough to make me realize that the current info offered on most web sites is sorely lacking in preparedness.
Just in the past couple weeks we have gone to several of DH's doctors and I wanted to cry when we left. They could rip out a page from a text book and hand it to me, but nothing more. Frankly, I'm more convinced than ever that DH does not fit any of the profiles that I've read. Like Joan says, those little quizzes that the doctors do, then claim he is the same as the last visit, just flat out stink. I want to not only rip my hair out, but the doctor's as well. I have to bite my tongue to keep from asking them to take him home with them for just a few days. Then give me their revised impressions.
Gretchen, consider getting an assessment from a cognitive therapist and having her send a report to the doctors. I know that I've suggested this to other people who are having a hard time with the doctors, but it is because my experience with physical therapists and my husband's cognitive therapists have been so amazing.
Doctors in general have a lot of respect for these kinds of professional therapists and listen to what they say.
Bluedaze and Mary, my husband is DX with FTD also, but there isn't a lot out there about it except that it is horrible! We could pretty well figure that out for ourselves.
Val, my thoughts totally coincide with your comment about the quality of the people in this forum. I am amazed daily at the depth of info given here, and know that I am already doing better at dealing with my DH since starting here. Again, my thanks to Joan and all.
Yes, a very amazing group. I was so desperate for information, I didn't lurk, didn't read any of the main page, I just threw my questions out there. I was stunned when so many people answered in such detail. I swear, Jane wrote me a PHD dissertation! She let me in on what my financial TRUTH was. All have been so helpful, where would I be now without all this information. Still lurking around in the dark, trying to figure everything out.
DH's dad had AD and passed away at age 91 in 1991. I guess I've been suspicious every time he forgot his car keys. However, about 7 years ago but if you'd asked me what was going on, I wouldn't have been able to have given you a definite answer. He had a TIA 5+ years ago and had to go through a bunch of tests in the hospital. They did a CT scan and I asked them then to do an MRI but the doctors said there was nothing to warrant such a test. His GP noticed he was getting very repetitive and I said I wanted to know. He went to a neurologist, had an MRI and all the rest of that good stuff and diagnosed with Mild Cognitive Impairment--that was 3 years ago. Last November he was diagnosed with moderate to severe AD and put on the Exelon patch and added Namanda 2X a day in May. Things are not going as well as I'd hoped with him being on 2 meds. Today he made 3 errors in driving. I can't drive at all because of Macular Degeneration and I cannot let him go driving by himself. He has to be told every turn to make. Today, he couldn't find the brake and couldn't tell his left from his right. Then he pulled right out in front of another car that had to brake and lay on his horn. He was clueless. I'm going nuts here. I have to get him to stop driving. There is no reasoning with him. I'm ready to cut up his driver's license and throw away the keys to the car.
By the way, what is FTD?
Sorry for venting, but my stomach is just in knots right now.
Mawzy-in a former life FTD was a floral delivery. Now it is frontal/temporal lobe dementia. Sort of like Alzheimer's disease on steriods. Nasty nasty nasty
There's a thread on the driving issue, but I haven't read any of it. So sorry to hear about all this, but you must get yourself off the road with him before you are killed! Or someone else is! When he can't find the brake, don't get into the car with him ever again.
I agree you must throw away the keys or get rid of the car if you arent able to drive either. try to arrange for someone to help you out in the meantime with getting maybe a hired driver. you are in a very dangerous situation for yourselves as well as innocent victims. divvi
You must, must get him off the road--repeat MUST! Have a relative or friend 'steal' the car and keep telling him the police have never found it. Lie, lie, lie, do whatever you can think of, but get him out of the car. If he's in an accident, everything you own--everything--can be lost in a lawsuit that you cannot win.
My sister is elderly but does not have AD. She has hired a woman who takes her shopping and on errands one day a week. It works well for her. I am also available and so is her son for emergencies, but get someone to drive you. This is incredibly dangerous. He'll drive w/out a license and he'll call the auto club or garage to get new keys made. You must get the car out of sight.
i just read an news headline article about a lufkin tx man 70yrs old who caused a fatal rollover turning illegally left turn-then within 4hrs caused a 10car pileup going 70mph..the article says police said he wasnt intoxicated or dui-..well time will tell if its dementia...get them off the road! divvi
Thanks you--all of you. You are telling me EXACTLY what I already know. I'll keep you posted. This isn't going to be easy to do. But, then, who said life would be easy, huh?
I had a 'heart-to-heart' with DH this evening. Tried to be very kind and explained how frightened I was. Explained how if, God forbid, he was in any kind of accident, we would probably be held liable. I expected a big blow-up. I didn't get it. He just said "Okay. I didn't know you felt that way. I guess I'll have to stop driving." I was stunned. I wonder if he'll remember tomorrow morning. I couldn't believe it. He was so passive. He's never been passive. Maybe in his heart he knows he really can't drive safely any more.
Mawzy, Be prepared for your husband to change his mind, hopefully, he will not. My husband quit driving last June, after being lost for 1 1/2 hours 5 miles from home, he was making mistake after mistake while driving that could cause harm to him and others. At 56 years old he was not a happy camper. Finally, came around to say I was right, however, every so often he brought up that he had a valid driver's license so he should be able to drive. His license expired in December, so that helps now.
Mawzy, there is a remarkable woman, Tracy Mobley, who was originally diagnosed with EOAD (at age 38!) and more recently, they've changed the diagnosis to FTD. Her husband describes her illness as "a pit bull with hemorrhoids". (She was not particularly happy with this description! but it sure stuck in my mind.)
She is now 42, I think, maybe 43, and she and her family are doing everything they can to raise awareness about AD. She wrote: Young Hope -- the Broken Road.
Mawzy: Things may very well work out. My DH gave up driving w/out a fuss, he seemed to understand the dangers involved. He was the one who said to me that we could lose everything we had if he was in an accident. But I believe everyone who says that it's a nightmare getting someone to stop driving--I don't envy them. So, here's to your DH and his understanding, chances are it will continue as it did w/us. He was probably as frightened as you were.
Mawzy -- my husband gave up driving without a whimper, too, and it's been about four years, now.
BUT!!! one of the other women who post here had the same experience, got lulled into a false sense of security, and did not try to hide the car keys -- she kept them in her purse. One day, totally out of the blue, her husband took the keys while her back was turned, and went for a little spin.
So even if your husband is being cooperative right now, hide the keys!
Oh, yes. This morning he'd completely forgotten last night's conversation. I let him drive to church--everything is fine until we drove into the parking lot. I had to tell him 3 times to slow down. The last time I said "Slow Down! Damn it!" He slowed down and told me I shouldn't be swearing especially when we are going to church. I have a knot in my stomach and a lump in my throat. My eyes keep misting over. And, tomorrow I have the most horrible job I think I've had in our 58+ year marriage. I'm calling his neurologist, the state patrol, the insurance company--whoever I can think of to have this stopped.
Our oldest son told me one time he would buy Daddy's pickup when the time was right. He has a 16 year old son with a lawn-mowing business. He needs a PU. I'm calling him and telling him to come and get it.
You may hear the roaring from where you are. I'm fully prepared. I need your kind thoughts and prayers.
Mawzy, glad to hear you're still alive. Wishing you luck with your challenge. Seems it is one of the hardest of all the challenges. I finally read the driving issue thread. Have to know this stuff, so when you're faced with it, you're prepared. Hope you can get some cooperation from someone tomorrow. DON'T GET INTO THE CAR AGAIN WITH HIM DRIVING. Hide the keys if you have to.
Mawzy, I feel for you- Have you read the thread on driving here? Many people have had a difficult time with this as well. Here is the link to the thread http://thealzheimerspouse.com/vanillaforum/comments.php?DiscussionID=21&page=1#Item_0
You sound determinded and that is a good thing, you will need all that and more. Stay strong, thinking of you Nikki
Mawzy - I know it's not funny, but LOL about the church parking lot incident!! He's unable to figure he's driving too fast in a parking lot, but perfectly capable of keeping your "cussing" in check!! Too funny!! Hang in there!! My DH got the "talk" from our neurologist and on the way home from that appt, he agreed he should not drive any longer either. He actually enjoys me driving him around now & I try to keep "his" music on the radio for his comfort :) Early on in his "no driving" days (been 2 years now), he would still get out & help me pump the gas...sadly even that is beyond his capability now. The idea you had about getting rid of the truck is a good one. And if he thinks he'd be "helping" his grandson, perhaps that would be another incentive to let it go. I hope you are able to go into this season of the disease with little difficulty. Praying all will go smoothly!!
I asked our doctor if there was any way to tell how long Lynn has had AD. He said it was impossible because he wasn't tested until AD was well into the 5th stage. I keep thinking on it though as he did have some minor issues in his late 50's .. they were minor... but so are the changes one notices in early stages of AD. So how do you really know? Is it EOAD or AD ? He said most people in the past did not seek medical help until they were well into the mid to later stages.
That made me wonder, if in the past many people have had EOAD, but it took years for them to be diagnosed? I was thinking that perhaps, thanks to all the wonderful people like Joan and Tony, that EOAD and AD are getting more media, reaching out to more people... so perhaps there is an increase in diagnosed EOAD due to these efforts? Whereas before, no treatments were sought until the Ad was well advanced. Just a thought, something I have been thinking on...
Maybe some day there will be a blood test that will help to diagnose AD. I have often wondered how long DH has had it. The problem with the answer is what if it was years and years - does that call into question every decision that they made over those years? What about the legal ones?