I have been thinking about this a lot lately, as there have been some post on scores on different test that gage different stages or should I say where our AD LO ones are on the journey. My Dh was diagnosed a year ago the 25th of this month. But as you all know the diagnosis date isn't the day the disease starts. I think for me, there were certainly issues even as far back as 2002 that because of the post polio and his age, no one would even think Alzheimer's. But when I finally knew we had to find out the answer to all the weird stuff was when he took a Blow Torch to our freezer, it wasn't the blow torch per say as much as it was his response to my being Pi$$ed that he did it. Oh by the way, the blow torch was needed in his mind because there was a zip lock baggie stuck to one of the shelves which by the way as I am sure you all know a simple wet hot rag or even the blow dryer or should I dare say the steamer would have easily taken care of. But his response was that it was the only way to un-stick it and how could I be upset when he did the responsible thing and un-stuck the baggie. He was really mad at the fact that I was mad. At that point I knew I needed an answer. I was telling a friend and she was the one that finally told me, You need to walk into the Doctor's office and tell him your concerns. Thank Goodness my Dh had an appointment the next week, I used the excuse that he kept forgetting to tell the Doctor (who by the way, was a friend from grade school, about some issues he was having with the post polio and a mole that I had a concern about. As my friend pointed out that it was buddy talk when they got together and the issues weren't being talked about. So when I walked in the Dr/friend said, wow I haven't seen you in forever why are you here? Of course Dh was a smart a$$ and said, she doesn't think I can remember anything. Thank goodness the Dr took over and just proceeded to start asking questions then gave him the mini mental. If you could have seen the Dr's face ( all the color drained from him when he saw Dh struggle with it) Having known my Dh basically all his life the Dr know's how smart he was, I could see he was flippen out after he realized he had missed some issues during regular appointments for the post polio so of course that led to the nero, MRI's, Pet Scan ect. It got me to wondering what was the straw the broke the camels back to put you on the road to find answers?
I have spoken to someone who found out because of a family member passing from an aneurysm so they got a test to check for aneurysms and instead found AD.
hmmm the first time my wife drove to a party an then called an hour later for me to come an get her,I told her YOU drove,this started quite an argument,finally she got someone there to find her car,have no idea how she found her way home
First thing for us, RK, was my DH would tell me he would get confused about how to get home when he was out, especially at night. He always made it Ok but didn't feel good about driving by himself anymore. Then he began to forget which drawer in the kitchen things were in or which cabinet his medicine was in.
But the incident that really made us seek professional help was a trip out of state. He couldn't remember where we were going or why. He stayed confused in the motel while we were away and started pacing, especially at night.
We went to the memory clinic when we got home and he only scored 17 on the MMSE test. His score didn't stay that low. He was much better after he got back into familiar territory and routines. With the help of medications and supplements, his score is now 23 and he's pretty high functioning.
This was a year ago and we have not been any further than an hour away from home since that time. I'd like to try another trip to see if it affects him the same way but sure don't want to see him slide downward again.
For me the moment of realization came when we were out shopping. We were looking for a particular type of CD case and went to several stores to compare. This was in 2000 but I can still picture the aisle at Walmart when he asked me for the fifth time what we were shopping for. His mother had AD (referred to as “hardening of the arteries” back in the seventies) and so it did not come as a complete surprise.
We talked to his PCP who diagnosed it as probable alzheimers, but it wasn’t until 2003 that we went to the neuro for testing for a definite diagnoses.
My husband's Maternal Grandmother & Mother both passed away from dementia...much older than 50, however, The first time was not a complete surprise, but, I knew it was time to see a Neurologist. We needed to go to the License Branch...we were backing out of the driveway & my husband stopped & ask me where the License Branch was. I always thought if it happened he would be much older.
My DH started losing stuff everyday, glasses, wallet, a tool he might have been using etc. Then we went out of state on a long trip. The most horrible trip of my life! He became totally confused as to where we were or going and why. Lost his wallet 5 times over the course of 7 days (we did find it - finally). I told him there was something not quite right and asked him if it was okay for me to drive all the way. He knew something was wrong and said he really didn't feel like driving - so that was not a problem. He was DX'd after we returned from that trip; started on Aricept then Namenda. That was in 2003. He is still doing well, has only declined a little, thank God.
Bama I knew something was wrong the morning he walked into my bedroom and asked me what went on last night after I went to bed. He thougt I was entertaining the kid across the street that drives a pickup truck. His eyes had changed color and his facial expression was one I had never seen before. I knew he was getting forgetfull but thought it was just getting older. At the time he was 83 and is now 86. We have been married for nearly 54 years and in that time he has never shown any signs of not trusting me. He still asks me what went on here last night and thinks I am meeting someone when I leave the house. He also thinks we have company when no one is here and he is always looking for his wife when I am sitting here.
We had moved to NW Florida where the children lived but he was never happy there so we moved back to North Alabama. We had only been here about 3 months when this happened. If I had known then what I know now we would have stayed there. Now I am here with no one to help. He is a 5 with some stage 6 and is progressing pretty fast.
Hindsight is a great thing. <grin> Probalbly 4+ years ago my DH started giving me the checks at dinners to take care of. I thought, gee, he's finally letting me tip the amount I want. (NOT) Then, he started driving really slowly and forgetting thoughts mid sentence. We blamed this on getting into our 50's. (NOT) Finally we explored depression a year ago and were told that he had to have neurological clearance first. That was in October and after a misdiagnosis of hydrocephalus, we received the AD dx about a year ago. I wish I had thought to have him evaluated earlier because the medication seems to have helped to stabilize him for now.
Note to Dazed: My DH and I "travel" these days to family members who kindly put us up. I find that he is most comfortable with people he knows well and environments he has experienced. We are planning one of these trips in a few weeks weather permitting.
first my DH landed his plane on the wrong runway with me in the copilot seat..:) then not to long after he didnt show up to trial for a very important case out of town..was lost the entire time and someone 'drove his rental car' back to the airport..God bless that person who i never knew)..sigh..the beginning of the end as we know it..divvi
Maybe 10 years ago he became to unreasonable about little things. He started saving coffee tins, plastic from meat trays, old magazines, you name it. I'm still trying to get rid of this stuff. In fact, last week, I got rid of 4 of those big black rubbish bags full of recycle. I'll never get done. Nasty stuff. Nobody seems to be the same. Also, he became so frightfully repetitious. same question. same story--over and over again. Until I really knew what was going on, I'd get so frustrated and short of patience. it's better now. Thanks to this group!!
I can't pinpoint an exact time, but weird things started happening. It was basically the personality change and that was at least five years ago. Of course, I had zero idea that the change would be due to something like this...I was mystified that a terrific guy could turn into a nasty monster. Eggshell walking started when we were on our dream vacation..rented a villa in Tuscany for a month, took the train to other spots, but used the villa as a home base. He started flipping out if I didn't give precise driving directions.."We're going to get lost!" Before he would have felt "so how bad can it be to be lost inTuscany?" The temper really got wild..and went on from there. He alienated our friends, etc. same old story.
When we changed the daylight savings time in April or March 2007, that threw him completely. He already was having trouble reading analog clocks, I now realize, and he had a LOT of trouble trying to use his computer or to read mathematics, but those were things he'd always done as much as possible on his own with no input from me. He was very antagonistic and grumpy. But this was the first time that he seemed to really believe that George Bush had changed the clocks and they'd never be right again. Since he was old (82 at that point) and physically not in good shape, I didn't expect a lot of him, but this was different. By summer, when I went as usual to a Maine island and left him to fend for himself for a few days, the first night he'd gone off and left the water running in the sink and flooded the floor. We might all do that, I know, but he had no idea what to do next. NONE. I managed to get him to call the neighbor to come help, came home, and have been home pretty much ever since.
I now look back at old computer docs that he had created, that I knew were in pretty good shape so in case it ever became a "Doubt" story, I'd have comprehendible ones - and they're dated to '04. Probably by '05 he was really messing them up.
Thanks everyone for jumping in with your sign's/red flags. It's amazing, as I look back that there were small issues that didn't even raise the red flag long before the weird stuff happened enough to raise the red flag. Looking back, Dh, who was a math wizard started having trouble with numbers. Counting back change? Should be so easy for someone like him. Multi tasking, basically all his adult life he had 20 things going at once, but somewhere in 2002 he started struggling with it. One (that I know of) issue driving where he got out of the truck without putting it in park on the highway. And as Mawzy said, collecting things. For Dh it was rubber bands................... zillions of the darn things, some stashes I knew of, but after moving I found so many more hiding places. There were rubber bands everywhere! It really wasn't until we sold our business that I knew for sure that there was way more things going on, I guess the sale and the move home to Colorado brought out more weird stuff so that each new strange thing started adding up.
divvi, I can't imagine, that had to scare the wits out of you!
I hate to say that getting the diagnosis was a relief but honestly it was, it at least put answer to all the strange stuff.
Ok, not that the AD life isn't strange everyday, What is the strangest thing your LO has done? For me, it was the day Dh put a pair of jeans on over another pair of jeans. He actually had them pulled all the way up before he even realized. This happened several years ago even before the diagnosis but during the process of getting diagnosed.
Boy i wish it was just a competition and not true. i will tell you all i am also a private pilot and got my license so i could land the sucker JUST in case because it was always just the two of us mainly..Dh has been a pilot over 40yrs before i knew him. logged more hrs than overseas commerical pilots! so i was always confident with him. til that fateful afternoon. i knew when he was 'circling' to hit the runway the tower had called out, he was going in the wrong direction. can you imagine? not being able to take the wheel from a pilot knowing hes going in ass backwards?? that day was the last time he flew and i sold his plane right out from under him . i should have known that precursor would set off the fireworks with 'driving' issues. when he did land and got his rearend chewed from the tower and all kinds of written citations, i fell out of my side onto the pavement and my legs were buckled i couldnt walk due to the fear of it all. i havent been in a small plane since..Divvi
I really can't match any of the above. One day our daughter (who had been through AD with her MIL) came to me and said "I'm worried about Mom's memory". I realized that I had noticed some problems, but was in denial. I had taken over the check book, which had always been her job, but attributed that to putting the information on the computer, which she didn't understand. Based on our daughter's comment, I took DW to a neurologist, who confirmed mild dementia, probably Alzheimer's. She was started on Aricept, but promptly vomited (for the first time in our 50+ years marriage). She has gone from that to stage 6 in 4-5 years, in spite of Razadyne (then Exelon) and Namenda.
We were taking a guided bus trip to Williamsburg, VA and he kept asking me about what we were supposed to do next when we were on the bus. The same question over and over and over again.
I'm not sure what else was going on, but it took me a year to ask about an "assessment". We started out with a cognitive therapist because the situation over my husband's accident and pacemaker event was enough like a stroke that there was the possibility that he might learn strategies so life could continue to go on more or less normally. We took our last cruise just before the doctor's appointment, and in many ways he was better off than on that guided bus tour, but he never figured out that the dining room was down and the buffet was up.
You can't fool a cognitive therapist who sees you for two hours a week every week for 6 months. She was the one who got us to the right neurologist, and the rest is history.
Wow, good question and hind sight is always foresight! For me, I suspected it about 3-4 years ago. DH started writing everything down and would repeat questions over and over until he had every word on every post it note. Then he started putting notes on the cupboards. I didn't connect it 100% until he threw the check book at me last year and said he couldn't do it anymore, I had to do it. I made an appointment with the doctor and now we are at approximately stage 5.
We had lived just outside Cleveland OH for 12 years but had been away for 2 years when my daughter got married in our old hometown. We had been back a couple of times a year and not much changed geographically during that time. However, on the wedding day, I sent DH to Target to find a basket for the programs at the church. I still don't know what happened to him, but he never made it to our daughter's house to drive with her to the church. He did end up at the church wearing his tux which had been at the hotel. No basket. My nerves were frayed and I couldn't imagine what was going on. There had been other signs previously, but I guess I always made excuses for him. Preoccupied with work, stress over a son, age, you name it. Right after the wedding, I got him into our PCP who found nothing wrong after blood tests and full exam. Then a psychiatrist. 4 months later we knew....
I worked at our school and the grandkids would come home with me two days a week. The year after my DH retired the kids decided Grandpa could pick them early. He started forgetting to pick them up; forgetting even after they called him; then forgetting his doctor appointments; phone messages, etc. Looking back there other things; he started having trouble hooking up our 5th wheel trailer; hit the side of the garage with his truck knocking off the mirror. But he insisted nothing was wrong. Finally when he didn't show up for a golf game with his friends from work, he agreed he needed to find out was wrong. The rest is history!
Strange thing after finding out. I started believing I was imagining all the strangeness. If I tried, I could find an excuse for pretty much anything. Of course he got lost. We hadn't been living in Cleveland for 2 years.... No wonder he didn't know our new phone number, I worked and he didn't call me at home ever....and, after all, we'd only lived there for 2 years... I got to where I thought I had made everything up and started this huge nightmare all on my own. I can still make excuses for him even today.... But I'm finally admitting it's real...
I have a question. Has failure to come up with a words in conversation ever been the first clue for any of you? I have concerns about my son-in-law who, as far as I can tell, has no memory problems, but often is unable to come up with the right word when talking with him. This has just started in the past year.
My husband was a shift worker in a paper mill. They worked a 7 days of 11pm-7am , 2 days off; 7 days of 3pm-11pm, 1 day off; and 7 days of 7am-3pm; 4 days off schedule. So he was always tired and I put alot of the small things he would do or forget off to sleep deprivation. But then started to have more short term memory problems and then he worked over on a day where he was supposed to only work from 11pm-7am. He worked to 11am and couldn't understand why it was not dark outside. He thought it was 11pm--very confused. That seemed to be the last straw for me.
I finally talked him into seeing his PCP and she sent him to the neurologist.
Lori, my husband would take his time in responding to a question, period. He would hesitate so long that I started answering for him, so that our friends wouldn't be insulted. I thought that maybe he didn't hear them ask, and after I gave the answer, he would nod, or say yes. I honestly didn't even consider that it might be AD.
Interesting question for sure. There were many things that really made me wonder but I always attributed them to having been relocated to a different community in 2000 and she was NOT happy about it. In 2002 we took a 3 week trip to Europe to see the place and attend the H.S. graduation of our exchange student. It was 3 weeks of misery - kinda like having to spend 3 weeks with your least favorite person. (we finally agreed to get a divorce while sitting on a park bench in Dublin - it was just miserable) On the way back home we had a very tight connection in London. We figured out where we needed to go and headed that way. We got caught up behind about 30 far easterners and she kinda got locked into staring at their 'garb'. They took a left turn down a another concourse and she followed them! I asked her where she was going and she said "this way". Asking her why, she replied "everyone is going this way"! I asked her if there might be a possibility they had a different destination than us and.....well, I can't repeat her response here. It was ugly. I just handed her her ticket and told her to have a nice trip. Shortly after, I noticed she was following me toward out gate. Though we made it home on time going my way, it continued to be a miserable experience. Thenneck
Oct 31, 2006 when he almost cut his finger off on a table saw - didn't remember it happening and was so calm about it.
Fast forward to fall 2007 when he started repeating things. I saw it as depression since we were back at my sister's helping her while she cared for her bedridden husband - we were suppose to be out living our dream of travel and workamping. Feb 2008 - my BIL has died, DH repeating and forgetting is getting exhausting. I demand he sees the doctor before we go back out on the road. Doctor orders neuropsychological workup and CT scan. Supposedly he called the doctor and said all was normal.
Normal?? when he comes back in tears from the neuro testing cause he finally realizes how much he can't remember things and believes me that he repeats all the time.
We go to our job in Nevada (from Washington) where I do him up a spreadsheet to remind him of his job duties. In August we get the report from the neuro workup and I am livid that nothing was done about it. Doctor recommended anti-depressant and dementia clinic for further workup.
He does not read, just takes my word it is bad. I honestly do not think he would be able to handle what all it said. October 20th, he sees doctor and I demand to know why there was no follow-up to it. Doctor orders MRI and neurologist says dementia possibly Alzheimer due to family history. We don't like the doctor cause he was unwilling to answer questions, did not exam,etc. so we came back to the VA in Portland. After more neuro testing the diagnosis is MCI. The doctor does not know if it will go further - we can only wait.
theneck, the personality change was the worst emotionally. Until you find out that it is AD, you get to the point of wanting to talk about divorce or actually talking about it. I thought about it, but having been married so long, and realizing that he had never done or said the things he was saying in 44 years, then added the weird things he would do, along with his determination that we hurry up and finish the travel scrapbook stories (he was typing them on the computer and during the day and asking me to check and correct them when I got home from work - and I notice that he was not able to complete sentences at first, then on the last one he tried, he had typed three sentences on the page that weren't even words!!! ) I called the doctor this next morning and got him in for testing. It took a year to convince the doctor to do the MRI and a neuro appointment and get the diagnosis of AD. He was that good at taking oral tests! A very miserable year indeed.
And with the personality change was an unwillingness to seek medical help. It was all me. As bad as it was, I was sure someone amongst her friends or family would say something to me about her behavior to validate my certainty that there was something terribly wrong. I knew I would not be able to just force her into a Dr. office and tell them that she was losing her mind. As bad as she was when I finally did get her in, they wouldn't listen to or believe me then! Long story short, I did not feel right about following thru with a divorce and (do you believe this?) she forgot all about it. Thenneck
My husband seemed to lose long term memory first. He has FTD. Thinking way back he lost many jobs because they were wrong and he was right. He was functional for quite a while. Of course I found excuses for everything-stress, long drive etc. Really shocked me when I came home from my 5 mile walk to find he had already eaten breakfast without me. In our 48 year (at that time) marriage he had always fixed breakfast for us both on the weekend. I knew we were in trouble.
marsh, it's not about matching it's about sharing, Thank you for sharing. You are the only one who had others question what was going on unless I missed another, that's amazing. Nice to know you had support.
divvi, Simply amazing! I would have had a heart attack, I don't care for small planes, sworn off of them! So much so that I won't be going to a wonderful cottage a friend has for 2 weeks this spring on a Island cause it requires a 30 min small plane ride. My loss!
Lori2, Dh has those issues now, but not in the begining. Though it may be different for different people.
CharlotteE, Do you drive your Rv? We could get a Alzheimer's rally going and have a great campout and let the LO fish or something. It would be fun!
It's been very interesting to read all of your post. It helps to see what drew others to seek help.
Lori, having trouble finding the right words is a symptom common to many different problems ... stress, for one. Those of us suffering from "caregiver dementia" can attest to this, in spades!
You might suggest that he see a doctor about it, though. He might be developing problems with his thyroid.
Good question - I've been asked it a lot because my DH's FTD has progressed so quickly in such a short time. Like others, experienced a real personality change and was becoming belligerent last year. Became irresponsible with paying bills, hiding mail, became even more stubborn than normal. We were under a great deal of stress as a couple and I thought he was just tired of being married to me. I too thought about divorce because I was sure he was seeking other companionship. Then he got lost on his way back from the grocery store. Got a call at 4:30 am the next morning from state police about 90 miles away saying they stopped him going the wrong way through a toll. Since he'd been gone for 14+ hours, I decided to look at my E-Z pass statement and credit card bills when they came in. He actually went all the way to Maryland (we're in NJ) about 200 miles and used $150.00 of gasoline in those 14 hours. I'm sure he went farther but could only track the journey by the E-Z pass and locations of the gas stations he filled up at. Thank God he didn't kill anyone.
Rk, I have been questioned, and still am, as Marsh was. My husband can be as witty, charming and with it as anyone who doesn't have Alzheimer's - for awhile. His front crumbles in about half an hour, but for that half hour, he's convincing.
Mary75, I think it's wonderful that someone helped ( for lack of a better word) confirm what you may have been thinking.
LFL, thankfully you were able to find him, crazy that he went that far. You have to wonder sometimes what really is in their little brains when they do things like that. hmmmm
mary, have you read the article on Alzheimer's that has a link on Joan's Blog page? It talks about three kinds of memory. The short term, which most of our LOs lose first, the long term, which goes later in the disease, and the IMMEDIATE. That is the one that no one told us about, and it is what makes it possible for them to carry on what sounds like a normal conversation unless and until they develop word finding issues.
That is in addition to the front all of them manage to put up for a short while. The length of the short while changes depending on the patient and how sick they are.
There were a lot of little clues. Then they got to be not so little. More than five years before diagnosis, we were moving. At about midnight on the last night in the old place, I went to bed and left DH scrubbing the kitchen floor. When I got up the next morning, he was still on his knees scrubbing the floor. He literally could not stop until I woke up and made him stop. He had huge open sores on his knees from scooting around on the floor in the cleaning fluids. This was the first time I knew something was really, really wrong.
After that it was the personality changes. My sweet, loving husband turned into somebody I didn’t know. Everything was all my fault. The man who never raised his voice turned into somebody who would get right in my face and threaten me.
Then there was the business trip where he was supposed to go to Detroit, but he went the opposite way when he left home. He had driven to Detroit enough that I would have thought he could make the trip in his sleep. He was nearly to Chicago before he turned around.
Having had no previous experience whatsoever with dementia, I had no idea what was wrong. Even the doctors we went to for the first two years after the major symptoms started had no idea what was wrong. By the time he was finally diagnosed, it was almost a relief that somebody finally recognized that something was wrong, and told us what it was. Then the realization set in for both of us, about what the diagnosis really meant.
I agree with those that have said the personality change was the worst emotionally. For me it was like being dropped into a surreal nightmare, this man I had adored for so many years was suddenly (so it seemed) someone else. This was before I knew the cause and had learned the techniques of distraction and therapeutic fibbing. To answer the question posed at the top of this thread, I, like so many others, realized something was wrong while traveling. We were at a resort in PR--when we left and came back, he had no idea how to get to our room. Then, we went to a presentation on buying a timeshare, and he left it all up to me! This from sharp guy who was a CPA--most unusual. Thankfully, we didn't buy the timeshare--when we came home, I researched it and saw it wasn't a good deal. It would have been a bad investment in many ways, seeing how things turned out.