I was doing rubber stamping with her and some friends, and I said we'd be at the next meeting of the stamping group. She VERY irritably said, "You didn't tell me about that meeting. How come you didn't tell me?" I had, not 20 minutes earlier. And everyone, including her, had just been discussing it.
We were on a bus trip to Virginia, and he kept asking me what was going to happen next. Over, and over and over again. I didn't remember either, but I had the schedule. At first I thought it was just that he needed to learn to do things like have a schedule in his pocket.
A year later we went on a cruise. He depended on me to get the two of us to the right places for meals. He never figured out that the buffet (breakfast and lunch) was up, and the dining room (dinner because we loved the people we were seated with and they loved us) was down. That was when I asked for an evaluation.
One day, as I was driving into town, my daughter stopped me and said she would ride with me. On the drive she said: "I'm worried about Mom's memory". I then admitted that I had, also, noticed a problem, but was in denial. I took her to a neurologist who confirmed the diagnosis.
We're having dinner. There's corn on the cob. He says "this corn is good." Five minutes later, he says it again. Then, again, 3 minutes later. Daughter and I raise eyebrows at each other.
Actually and honestly, it was before that that I at least considered the possibility. It's my nature to overthink, so once he began slipping in a variety of ways--AND it was confirmed by my b-i-l (husband's business partner) that he'd made similar observations--that I found myself sitting in Borders, flipping through Alzheimer's books to see if they described what we were seeing. And it was a little shocking to be thinking that way, because he was only in his mid 50's. Confirmation--the right neurologist, the right tests (meaning PET scan) didn't come until a couple years later.
yes, the oh no momenet. My husband wanted a new tire, and he absolutely didn't want it from Ferguson's, he didn't like the new owner. Couldn't STAND the new owner. He wanted it from another place 10 minutes away from our house. I called the other place, had them order the tire, made an appointment for 3:30. My husband left the house to get the tire, the other place called me around 4:15, he had not shown up. Did he sitll want the tire? I panicked. I told the guy he left the house close to an hour ago, he must have been in an accident. In walks my husband, he had gone to Ferguson's! I told him he had insisted that he didn't want to go there, he said he got confused. After that I insisted he get a brain scan, I thought he had a brain tumor. Results negative. I still don't know why I was calling for the tire. At any rate, after the brain scan he was smug....see, I told you there was nothing wrong with me. I had noted memory loss before this event, but it was my oh no moment.
His brother just called. Insisted on talking to my husband, even though I had asked him to wait until I had seen an Elder Law attorney. Didn't "tatle" on me for calling, but kept insisting he talk to his brother. I listened in on the conversation, and the brother is asking HIM, not me to come for a visit. I don't like the sound of this. What's up with that? He just asked my husband, how he was doing, etc. But WANTS to visit or have HIM visit. He didn't bring up the property taxes or any of that. My husband, after his brother said he wanted to call back on his land line, screamed at me, what have you told my brother. I said nothing, I just answered the phone. Sure he was afraid I had told him about the 2nd sale not going through due to the inspection, which I had.
Four years before the diagnosis of AD, I recall writing in my journal that my DH was having memory difficulties. It didn't dawn on me that it could be ALzheimers as I didn't know anything about AD, didn't know anyone with AD, and just was too dense to believe it could be anything that would develop into a disease that would affect our lives so drastically. We continued to go on trips with friends,i.e., to batttlefields, Canada, out west etc. However, our friends were beginning to notice my husband repeating over and over, memory difficulties, My husband was a sunday school teacher and gradually I began to prepare the lessons, help him in the class. I also had to take over the checkbook, pay bills, as he just stopped taking care of them. I finally began the rounds of doctors trying to find out what could be wrong and after a year of this, my son found a diagnostic memory clinic connected with our local university who was studying Alzheimers. They were able to ascertain that it appeared my husband had Dementia of the Alzheimers type and from then on, although he never talked about it to me, I took over the decisions in the home, the driving, the repairs, etc. I have always regretted that we never discussed his illness candidly and then it was too late. I don't know why I didn't insist on a dialogue but I didn't and now I don't know what he knew about his illness and how he felt about it. I sometimes wonder if he blames me for some of the decisions, especially when we had to place him i n his first NH. I would urge my fellow spouses to try and speak about what is happening to your dear one, why y ou are doing what you are doing etc. as I really don't know how he views my relationshiip to him in his confused thinking. I never had confrontations with my dear one and he followed my lead most of the time which was easier for me but I don't know what he really thought.
Sounds like you had his best interests at heart, and you should relieve yourself of any guilt. Have no regrets, we all do the best we can at the time with the information we have.
My husband insists that his brother invited both of us, but I know to the contrary, since I listened to the conversation. I am afraid that he will get his brother alone & tell him I am after him. For what purpose? But that is my fear.
Mine was going to try a lawsuit in West Tx and never showed up at court! he rented a car at the airport and who knows where he drove, he never made it to the town he was supposed to be at. i have no idea but he says a 'good samaritan' drove him back to the airport. he caught the plane and i found him wandering the airport parking lot..i think he did have a stroke which the MRI confirmed some issues, we had testing done over several yrs back/forth- first tests he did so well, and drs said 'job stress--retire " but then vascular dementia with possible AD followed after a second series of cognitive testing.. divvi we went about 4yrs back/forth without a firm diangosis.
Carewife-I, too regret not having the chance to talk to my husband about his illness. By the time a diagnosis was made it was too late. He has FTD and spiraled downward so quickly it left me gasping. He is at stage 6-7 and just hanging on by a thread. I wish it was over. No quality of life at all.
Around 2001 my wife M's forgetfullness was starting to worry me. I asked our family doctor what could I do about her memory. He advised that it was "just normal aging, don't worry about it." She was 67 years old and I was 65.
Her gynecologist stopped her estrace-provera therapy several months later as that estrogen replacement concept was now cosidered dangerous. Then her mental condition really got bad. She was seeing people that weren't there at night. Her forgetfullness was very noticable. She became irritable.
I took her to several doctors and had numerous tests done. In 2002 her new geriatric psychatrist looked over all this data and said it was most likely Alzheimer's. He prescribed Aricept and Seroquel and she responded well to those medications. When she responded favorably to Aricept at that moment I knew it really was Alzheimer's. He said the estrogen therapy had been acting somewhat like Aricept and had masked her Alzheimer's for years before.
She is now late stage 6 and is still able to live at home with me.
For me, it wasn't a moment. A strange behavior here, a puzzling comment there, separated by weeks and even months of normality. Over time, the pressure would build, and I would finally reach the point I was worried enough to tell my husband I thought he should see a doctor. He would tell me there was absolutely nothing wrong with his mind, and I would be reassured. But then he would do something puzzling again...
I think what pushed me into insisting on seeing a doctor, no matter what my husband thought, was that he dropped 35 pounds in a few weeks. He was also sleeping for many hours every day, when he used to be constantly active, doing, pottering, moving, fixing, straightening.
I did not think it was AD, I thought it was stress and/or clinical depression. Even after my husband agreed to see a doctor, and I found one I felt we could talk to, and the doctor had started the myriad of tests needed to rule out other problems, I thought it was clinical depression. After the first MMSE, the doctor even told me he did not think it was AD.
The psychologist who administered the two-day evaluation felt there was something wrong, but that the symptoms did not fit AD.
The neurologist to whom we were subsequently sent, spent a few minutes going over the reports, a few more examining my husband, and then administered another MMSE. Then she announced, "I don't know what the question is -- it's as plain as the nose on your face he has dementia."
Question: How does a neurologist determine AD? And apparently even dr.'s disagree on the diagnosis. It is difficult when they can act so normal in the outside world, but YOU have serious concerns after experiencing it all. I guess they don't know who to believe, the spouse or the one who gets by after behaving normally in the presence of a dr. Seems a little education is needed when it comes to physicians. They don't understand when the normal spouse is not believed, then the disease has to progress, and in the meantime A LOT can happen. In retrospect,I feel that the radiologist who told me the brain scan was o.k. should have referred me at that point to someone else. I didn't know one thing about AD. I guess at that point I was relieved he didn't have a brain tumor. (Head in sand again.) I obviously was concerned enough to insist my husban have the brain scan. Wouldn't that have sent off an alarm bell? You seemingly just have to make it through the maze alone. Each case is different, each dr. has a different reaction/opinion.
Val, a diagnosis is still very difficult, even for a highly qualified and experienced neurologist. There are many tests that should be done to rule out the myriad of problems that can cause a pseudo-dementia (i.e., a problem that causes the same symptoms, but that is treatable.) An MMSE can be useful in providing evidence of a problem, and even some evidence that a patient has AD as opposed to other disorders that affect cognitive function. However, an extensive neuropsych evaluation is needed to help pinpoint the problem. Then, imaging tests are usually ordered, such as an MRI followed by a PET scan. The MRI can determine whether the brain has been damaged by strokes (vascular dementia) and/or is shrinking more than would be expected for a patient of a given age. The PET scan shows which areas of the brain are able to utilize glucose efficiently.
Unfortunately, far too many doctors simply assume that, if the patient is older, dementia-like symptoms are caused by AD, and just prescribe aricept or namenda and go on their way. Even neurologists often don't know what tests should be done, because they specialize in other types of disorders -- epilepsy, migraines, etc. (My husband's ex-neurologist specializes in migraines. My husband had had the extensive neuropsych and the MRI, and the neurologist did order the PET scan after she'd diagnosed dementia, to help determine whether he had AD. But then, he responded very well to the namenda she prescribed, and she thought that never happens -- wrong -- and sent us to a nearby Alzheimer's Disease Research Center for a second opinion.)
That's why you often have to find a memory clinic or research center that routinely works with AD patients, to be sure you've found a qualified doctor (or panel of specialists) and gotten a reliable diagnosis. And even so, they may change the diagnosis as time goes by, and the patient's symptoms change.
We just had the final exam on my husband's clinical trial. I spoke with the doctor running the trial about switching neurologists. Several doctors at the Center have private practices. She was willing to recommend the one she thought would be best for my husband (since she has been testing my husband every three months for two and a half years and knows him pretty well), and she arranged for my husband to be examined by this doctor during his next round of the longitudinal study, coming up next month, so we can see how well my husband gets along with him.
It's been interesting reading how everyone first suspected AD. I noticed my wife asking the same questions over and over, both to me and to others. Then when she talked on the phone to her daughter she couldn't tell me what the conversation was about. She would always say "She just talks so fast". One day I talked to her daughter and asked if she noticed anything. Well we had that "aha moment" as we both realized what was happening.
One other common thread seems to be that when we look back, the first symptoms are usually years before we really diagnose, or start to be aware of what is happening. I think this is a hopeful sign, as when I first learned she had AD, I was crushed, thinking "This is the end".
But now two years later, things are going better than for a long time. I have learned not to expect much from her, not to push for answers when she says I don't know, not to put her in situations where she needs to make decisions, etc. She has learned to depend on me to help her with many things that I didn't think she needed help, handling all finances, doing the cooking, etc...
We always looked after preparing the forms and filing our own income tax returns. My husband was exceptionally good with math , numbers etc. He would have his return completed in an hour or two. I took a little longer to complete mine.That year he struggled for hours with completing the return. We filed. A few weeks later, his was returned. It was totally incorrect. Even now he does well with simple math and counts backward by 7s like 1 2 3.But, he could not unddersatand the questions being asked on the form and did not know what info was required. There were other signs and forgetfulness, but I hadn't caught on. Also he would stall for words with ummm ummmm, I thought it was a habit. He doesn't do that anymore as it no longer works. His language are disappearing quickly as is his short term...well we're in stage 5/6. That night we had a glass of wine , watched the sunset, then I asked if he wanted to talk about his memory. He cried. Then told me that he had been having problems remembering things. It was a short discussion. It was the only time he spoke. He remains in denial...or now I guess he really does't remember how it used to be prior to AD.That was seven years ago.
I've read that the diagnosis coming only upon autopsy is a thing of the past. There is some new imaging test that can see where the AD ocurrs. I imagine it's expensive equipment, and don't know where it can be found. It is not an MRI, nor a PET.
Nice to meet you skee, never heard from you before. My husband will make his point at least 3 times, at which point I say, I understood you the first time. He will say that's because your didn't acknowlege me when I said it the first time, when I had actually said, "I agree." (Only to make peace, not that he was right.) Yes, looking back, I should have taken notice. But I truly didn't know what was going on. Glad to hear things are going better for you. Seems we all learn to keep our mouths shut & live in a non-normal world. If I verbalized to my husband what was REALLY going on my mind, it would be WWIII.
Val, I decided to go and look online to see if I could find anything about the test you mentioned. On Medicine.net I found the following statement:
"As of June 2007, there is no specific "blood test" or imaging test that is used for the diagnosis of Alzheimer's disease. Alzheimer's disease is diagnosed when: 1) a person has sufficient cognitive decline to meet criteria for dementia; 2) the clinical course is consistent with that of Alzheimer's disease; 3) no other brain diseases or other processes are better explanations for the dementia."
Basically it is Alzheimer's if EVERYTHING else has been ruled out because when they look after death, Alzheimer's is still the most likely dementia.
I really hoped that you were right, but unless that test has been developed in the last year, we don't have one yet.
Yes, I have read about it. Most of the literature states the opposite, but I did find literature that says the new diagnostic tool is available. I will try to find it again. It is recent, and I talked to someone who knows a researcher in CA, & he confirmed this diagnostic tool is available, not widely used yet.
Val, the last time this subject was raised (just a few days ago, I don't remember where) I checked into it. There are plenty of researchers developing techniques, and they typically claim excellent reliability when they publish ... but I could not find anything that had made it through a clinical trial yet. And just as with investigational new drugs, investigational new diagnostics can look great in the lab, but fizzle in the field.
I found lots of promising techniques, but they'd only been tested in a handful of patients, not enough to make any definitive conclusions.
In 1998 we fulfilled a lifelong dream of my DH by getting a 26' Bartender (so called because it could go over the Columbia River bar in Astoria, OR) wooden boat built. It was the prettiest boat, but my DH could never remember how to operate it. It was like starting over week after week. Since he was able to earn a PHD in his life and run a department in a school district I was really surprised. The official diagnosis didn't happen until 6/03, long after we put our pretty little boat on the market.
My oh-no moment came about three weeks after being on Aricept and my husband was able to remember what classes he had the next day. Prior to that, he had to check the schedule I made up for him to know where he was going...this being after nearly the whole semester going by. The words of the neurologist rang loudly in my ears that night "Remember, we don't want to see an improvement on Aricept. If we do, that means that there is something serious going on".
When the early Daylight Savings Time came in, a bit over a year ago, my husband blamed it on Bush. If one of the clocks in the house was off by one minute from another and he discovered it, that meant that all clocks were totally unreliable, and THAT meant he could have lunch at 9:30 am, dinner at three; and it was All Bush's Fault. That absolute certainty, not joking, made me finally realize that there was REALLY something the matter, not just absent-minded professor stuff.
Oddly, this year it didn't bother him, and he's finally learned I don't make lunch before 11 or dinner before 5.
That's just it, I didn't suspect Alzheimer's, it never entered my mind. My DH was an extrovert all his life. The "life of the party" many friends , made his living in sales. I'm sure you all know the type.He seemed not to "process" some things I would say, but since he has a mild hearing problem I just thought he didn't hear me. About 2 years ago I went to a therapist because he seemed to be withdrawing from me, emotionally and physically. Her suggestion was for me to go and do some volunteer work to feel better, so I did. Didn't help. My DH continued to be more passive, wouldn't go anywhere, didn't want to do anything, just not himself. Then one morning on AOL they listed the symptoms of Dementia and Alzheimer's disease. What "popped out was the substitution of "like" words for familiar and since that had also been happening I thought "oh my God" does he possibly have Alzheimer's? That was the defining moment for me. After that ,Doctor's appointments,an MRI and the diagnosis. How could I have not known, I keep asking myself. No answer. I'm so sad.
I just read the post from Kirsty Holding Fast and noticed the statement from her Doctor "Remember, we don't want to see an improvement on Aricept. If we do, that means that there is something serious going on".
What did he mean by that statement? I feel my wife has improved while on Aricept. Is this a bad sign? of what? that the AD will progress faster, or that it is something other than AD, or ... ?
I thought things were going very well, and now you are starting to scare me.
For us it was so different. I have to say that I knew something was wrong because DH kept forgetting things and that was not normal but when asked his doctor said it was age and at 70 it was to be expected, but he was in great shape. (right!) Than he made an appointment with a new cardiologist (I never understood why he did that) and was put on medication for his colesterol. Within days he could not remember numbers. Not his SS #, our phone #, pin # on his debit card, none! He got scared and went to see his GP (not anymore) and was told to stop taking the new med for the colesterol and to see a neurologist. The neurologist put him on Rasadyne and mumbled about demensia and AD. He ordered a CAT and an MRI and said at some time he did have a stroke. No definite diagonosis. He has a new GP now and we have asked to be referred to a new neurologist. Hopefully we will get a diagnosis soon. He takes his meds and is still working at 72 but I can see that he is starting to get worse and am not sure now where he is at. He has good days and bad days and getting really upset makes things so much worse and he only comes back part way when that happens. I am not sure where to turn from here.
skee, the doctor was using the drug for two things. He was using it as a diagnostic tool. If the patient improved on the drug, the patient probably had Alzheimer's or Vascular Dementia and not just the aftereffects of a stroke. There are ways to do therapy with a stroke that will not work with Alzheimer's or Vascular Dementia. (And in fact that was how we got our diagnosis. Therapy DID NOT WORK.)
The second thing he was using the drug for was to try to hold off more advanced symptoms. Since the patient is still working, this is a very early diagnosis, and the drugs will probably help for a long time. The idea with these drugs is to start them early.
Trudy, it sounds like the neurologist did all of the appropriate tests. If the new one does new tests you need to try to get him the old tests so he can see if things have progressed.
For Alzheimer's the diagnosis is generally that everything else has been ruled out. When it can't be anything else, it is Alzheimer's. If they find evidence of one or more strokes or stroke-like episodes, it is Vascular Dementia. I believe that between the two that covers about 75% of dementias.
As for the GP, you needed to fire him. I've got a really great medical group that I found as soon as I moved to Pennsylvania, but in California I once fired a doctor from my hospital bed. He had me ordered back to work the day BEFORE they released me from the hospital because, of course, there was nothing wrong with me. I actually didn't go back to work for 2 months. I had the worst case of Hepatitis that any of the hospital doctors had ever seen.
skee, it's a very good thing that your wife is responding to the aricept. For some AD patients, it isn't effective at all, and in others, it can cause nasty side effects. It's great that it's helping your wife.
The doctor meant that if Kirsty's husband did improve, it was likely he did have AD. I haven't ever seen a doctor suggest that this is a way to help diagnose AD, and I'm not so sure it is reliable -- many people with many different problems get better when given medication, or even sugar pills, due to the placebo effect. I suspect the doctor was trying to soften the blow in the event the aricept did NOT help her husband.
Hi Skee, The others are correct. The neuro offered us Aricept because DH is in seminary and was desperate for anthing to help his cognition. The neuro gave us that caviat (sp?0 because he personally has not seen improvement with Aricept unless there is Alz or another form of dementia going on. My husband has not been diagnosed but I believe its coming. Sigh.
Interesting. I guess my oh no moment came when he was following me home from the service station, and I turned to get to our house and he missed the turn... Thank goodness, I had left his cell phone on, in his car (I guess even then I knew because he had gotten lost before but not so close to home). i called the cell phone when he didn't get home in a reasonable amount of time, and he was parked in a shopping center at the entrance of our development, with no idea where he was or how to get home. I drove down and got him to follow me, but then I knew. Getting lost, actually for some time even before that, was not uncommon, so I guess I had an inkling of something going on. there were tell tale signs, that was about 8 yrs ago. He's been holding at stage 6 for some time now, just occasionally moving into 7 but of course worse is coming.
Just before Christmas 2003, I started to notice him "losing things". We spent a lot of time looking for glasses, wallet, etc. Then in March we went on a long trip to visit his son in Panama City and my son in Ft. Lauderdale. Worse trip of my life. He was so confused, and again, lost his wallet several times (fortunately, we always found it). His son is a neurologist - and I asked him to observe his Dad while we were there. He did - and we had a family conference - he told his Dad what he thought was happening - and it was almost a relief to DH to find out what was wrong! We immediately got an appt. with his doctor upon returning home - long story short - AD. He drove for about 2 years after that, then had a minor accident and handed me his keys - and he's never driven nor wanted to again. This is year 6 and he is doing well - has not declined considerably.
We were on vacation in Puerto Rico, and when we left the resort and came back, my husband had no idea how to get to our room. Each time, it was as if it was the first time he had been there. My heart stopped when this happened--we had always feared he would inherit EOAD and this was the first telltale sign.
He retired at age 53 in 1991, he was 3 hours late picking me up in 1993. In 1998 he referred himself to a neurologist, who told him he was fine. Things went downhill from there. He misplaced my Christmas present, he lost credit cards, he lost money, he messed up the income taxes. He was diagnosed with MCI put on Aricept, then Razadyne, In 2005 he was finally diagnosed with AD. It was obvious to me much before that. I just think it took a long time for a diagnosis.
I suspected nothing before being hit between the eyes with the request: "Tell me aboiut his Stroke History."
He was multiply learning disabled. He had developed Schizo-Affective Disorder. He had a severe electrolyte drop due to a side effect of extended exposure (18+ years) to Tegretol. He was in the hospital to get that under control and change his psych meds. We'd married in 1974. This was 2006. My answer, "What Stroke History?" News to me. Followed by, "He has Vascular Dementia." He came home in the early end of stage 5. He is now showing, or has shown everything in stage 6 to some degree. He is still mobile, but not as steady nor with stamina. Has to be showered and helped to dress after.
I don't know if it would have been better to have had a clue before Dx or not. I do know the "Surprise" was not a good way to learn of it.
DH was diagnosed almost 3 years ago with AD. I didn't suspect--I knew that's what was wrong. He made a total mess out of the checkbook several months in a row. He generally wrote the checks and paid the bills. I reconcilled the account every month. I suggested he use a calculator or something because he was having so much trouble with the arithmetic. He got mad and said since I knew so much, I could just do it myself. Well, I took over that month. That was at least four years before the diagnosis.
Also, he kept saying one thing and doing something else. There was no doubt in my mind. The problem was getting him into a doctor to check it out. He had a TIA about 6 years ago. That's when we got a CT scan and a couple of other tests that proved inconclusive. Finally, got the MRI, the blood workup and all that other good stuff. AD. Terrible stuff.
My DH was delivering pizza at night and he called me and said that he didn't know whether he was suppose to deliver a pizza or had just delivered a pizza and he said he was at a stop sign and didn't know how to get back to the pizza place. Then he called me 10 min. later and said he was alright. He had just got back to the pizza place. That was the longest 10 minutes of my life. I didn't know where he was, it was a good thing that I had already gotten him a phone.
I had noticed a few things over a period of time but hadn’t really thought anything was wrong other than just normal forgetfulness that comes with age. One day I asked Kathryn what time it was and she spent about 10 minutes looking at her watch and couldn’t tell me what time it was. A few days later I was watching the weather when I left for work and left the TV on the weather when I left. When I got home it was still on the weather and Kathryn told me the TV thing was broken and she was not able to change the channel on the TV.
I started thinking there was something wrong so over the next few weeks I started leaving the TV on different channels and it would still be on whatever channel I left it on when I got home. I would ask her the time every so often with the same results. She couldn’t tell me what time it was. Then Kathryn started asking me things over and over. I still didn’t know what was wrong, but I knew something was, so arranged to get her to the doctor and told him what was happening before we got there. He did a few test One of the test he did was having her draw the hands of a clock which she was not able to do. He told he suspected Alzheimer’s and wanted to have Kathryn seen by another doctor who confirmed that it was Early on set Alzheimer’s.
I knew something was wrong when I came home from a business trip and found several past due notices in the mail. I was gone a lot working and she stayed home. Sandra did not work outside of the home and she used to take care of the bills. She then admitted that she was having trouble paying the bills online.
In 2006 we took a trip to visit our daughter and family, drove about 1500 miles. On the first day of driving, I noticed that he got anxious asking me when we would be heading north and we had been driving north for about six hours. Next day he kept getting confused about road signs, even though I would tell him the next number to look for he would see a sign (that was not the right one) and want to turn off the highway right then. Then I realized that he often veered to the left and other drivers were honking at him. Up until then I was always comfortable because he was an excellent driver, but this time I took over and did the majority of the driving for the rest of the trip. I also noticed his change of personality that year. We had so many fights over trivial matters. It was then I started researching on-line and the word dementia kept coming into focus for me. Then in 2008 he started with the questions over and over again and the nastiness that was never, ever, there before during all the years we were married was becoming more prevalent. Finally in January 2009 I asked the PCP for an evaluation and AD was diagnosed. He has calmed down a lot and now has times of slipping into thinking it is 1961 and we are newly married. I finally have learned not to argue, let him be right, because that at least keeps things peaceful. Can't help wondering what the future holds for us. It is very sad to see him who could take care of all our needs be so dependent on me now and not realize it.
I started wondering what was wrong when his personality started to change from a laid back guy to a rude, mean person. We put it off on side effects of chemotherapy for awhile but when it didn't get better and then he started getting his times (am and pm) mixed up, ignoring his kids, and not wanting to do anything, I insisted he see his PCP. She sent him for a CT scan and the neurologist. CT came back normal but 6 months later after being sent home from work due to confusion, a MRI showed frontol atrophy. Diagnosis--probable FTD.
In the Fall of 2001 my daughter and I first noticed that my DW was repeating things that she had just said. We found that irritating at the time and would tell her "YOU JUST SAID THAT!" As time went on we noticed other problems with her short term memory and finding the right words for things. She gradually showed more and more signs and we were quite certain by the time she was diagnosed with EOAD in early 2006. She is now well into stage five and some stage six.
For me, it was pretty much what Debbie said. It was the personality and mood thing. DH also turned rude and mean but mainly with just me. He seemed more abrupt with others expecally our children. He was always right about everything and would not see or consider any other view of a situation. Started fighting with me about family get togethers. It was a struggle getting him to go anywhere. Camping and fishing plans became so hard. He had trouble focusing to complete a task. It wasn't that he forgot what he was doing; he just made it so hard on himself and on me that everything had to be perfect. He would work on things like a small engine and forget how to put it back together. Again, not so much forget but become overwhelmed to the point that he couldn't function.
I also thought it was depression or something like bipolar. almost two years ago, I did a search with his symptoms and found a discussion on this site about FTD. I was nearly blown away as it fit so perfectly. As I did more reading about all the various symptoms, I am pretty sure that this has been coming on for at least 10 years. Progressively the following is happening, anger and adjitation most of the time, overwhelmed by little things and discussions, not able to grasp an indepth discussion, some money counting problems (bills not coins), just recently is showing some very short-term memory problems and problems with carpenter measurements.
I am also going to add this discussion to the new FTD discussion.
It was my son and DIL who first talked to me about the changes in DH's behavior. Since we see them only every 4-5 months, they could see the changes more clearly. I pooh-poohed the idea at first but had to admit that the things they were noticing were indeed changes. I didn't know that AD could be first heralded by changed behavior rather than memory issues, but my son had a friend whose father had gone through many of the stages already, and DIL is a nurse with experience in a nh. The behavior changes they noticed were things like uncharacteristic rudeness, retreating into a quiet room when the kids were noisy, less skill in playing games, loss of social skills. I had to admit they were right and then realized that his inability to deal with junk mail and salespeople was another symptom. Since he was in complete denial I waited for a long time before seeking a diagnosis. SInce then he has lost many skills, but memory issues have only been developing recently. He is still in complete denial.
If you are interested, there is a test called a Brain SPECT. Google spect scan and also Alzheimer's. I think this may be the diagnostic test you've been talking about.
Summer of 2006 my DH started to think that something was wrong with him. He noticed some memory issues. A visit to the PCP showed nothing. Summer of 2007 he had an MRI which showed "normal aging". Summer of 2008 we switched doctors. I sat in the examining room with the PCP and my DH. I said that my DH was having problems with electronic devices: computer, microwave oven, etc. The Doc's first response was that many folks have problems with computers. Then I told him that my DH rarely knows what day of the week it is (or month). That set off a clear signal, apparently. We were scheduled for extensive testing with a memory specialist (about 6-7 hours of testing). Other tests were conducted; another MRI and (extensive blood work) and the results came in - mostly from the extensive memory testing that he had AD. The final diagnosis was made in early September of 2008. He has been on 5mg Aricept (he cannot tolerate 10mg) plus a GSK drug trial that is wrapping up in a few weeks. The next step is probably Namenda and/or the Exelon patch. He was holding his own in stage 4 but is now slipping into stage 5. Some days are better than others - but the bad days are coming more frequently.