I received an e-mail from "Helen" who asked that I post her question on the boards - she does not want me to e-mail her for home privacy reasons.
Her basic question is - "how it was for you (and others) to get from the place where we are now (is it dementia or is it something else or ????) to having an actual diagnosis. So far I haven’t come across too much that describes the stage when you moved from first wondering what was going on . . . when you approached doctor . . . and the process of getting diagnosis." Below is the edited text of her e-mail:
"..............We don’t have a diagnosis yet although our family doctor has mentioned the possibility of dementia to explain the symptoms my husband has been experiencing. At this point in time, my husband does not want to discuss any symptoms with the doctor. Occasionally he will share frustration with me around his memory confusion or fatigue but most of the time he won’t acknowledge it. At first I thought maybe he was experiencing some hearing loss as he didn’t seem to be catching what we were talking about. Then I thought the symptoms were related to other health problems he has . . . maybe some brain fog and I talked to our doctor about it. That was the doctor said it could be dementia. A couple of times my husband has agreed to talk to the doctor and even asked me to go in with him but later when I suggest booking the appointment he can’t recall saying he wanted to go into the doctor and sees no need . . . after all, nothing is the matter. So I began looking on the internet and found your site a couple of weeks ago. I can identify with many of the experiences and emotions described . . . makes me wish we knew (had a label) for what is going on . . . I wonder if I’m reading too much into the various symptoms but after reading some of your postings I think, the doctor’s suggestion about dementia could be right.
As I was reading through parts of your site I started to wonder how it was for you (and others) to get from the place where we are now (is it dementia or is it something else or ????) to having an actual diagnosis. So far I haven’t come across too much that describes the stage when you moved from first wondering what was going on . . . when you approached doctor . . . and the process of getting diagnosis. I’d be very interested in reading about that if you could post something......."
I knew we were in trouble when long term memory as well as short term was worsening. Patterns from a 49 yr marriage were gone. Logic was disappearing. Rages at nothing were becoming the norm. "Helen" if you are wondering I fear your battle has begun.
What is so frustrating is finally going to a doctor and having that professional say there are no problems. That happened to us and then we contacted a hospital in our area that does research. They did a more thorough job and diagnosed Mild Cognitive Impairment, which changed to AD in six months at the next appointment. So, if you think something is wrong try to find someone in this field who is qualified to diagnose.
We actually originally thought that it was just hearing loss. My husband turned out to be as deaf as a post and needed two hearing aids. It looked that that was doing the trick, but not quite.
The next thing we tried was cognitive therapy, because the family doctor thought that was a good place to get an "assessment". It is almost impossible to pull the wool over the eyes of someone who is doing therapy on a daily basis with stroke victims. Stroke victims learn the new strategies. They get better. People with dementia do not, but sometimes in the earlier stages the strategies do work for a while.
She was the one who sent us to a neurologist because it was obvious that whatever was wrong with my husband, it could not be fixed.
So our getting from there (not knowing what was going on) to here (where we DO know the hard truth) was a lot different from the paths others took. And the path we took might just work a lot better with someone who is in denial because it takes it for granted that he CAN learn and CAN improve. And if it is something else, something that can be fixed, the therapist will know which kind of doctor to "scream" for.
I got my DH to a doctor about 9 mos. after I was as sure as I could be that he had AD or another serious problem. He didn't want to go to the doctor. So, I made an appt. for myself and told him I wanted him to go with me because I was afraid of bad news from the doctor regarding an infection I had. (I had no infection, I made it up). I would make up any kind of story you can to get him there. You will find that you will get very good at story telling and don't worry about it, he won't remember.
When we got to the doctor. I just told him my DH has a problem and I am worried sick. I said..."he thinks I took money from him, he thinks someone is stealing things in his garage, he had two guns he put some place and only Lord knows where they are and he can't remember our address or phone number" Of course my DH was mad as hell, but I didn't care.
Our family doctor was very very understanding and sent us to a neurogist , which neither of us liked. I felt like he thought I was crazy. So my DH wanted to go to the VA. Good luck to you and God speed.
I knew my DH's memory was getting worse and made an appointment with our family doctor. He sent him to a neurologist who sent him for and MRI and other tests. the MRI found my DH had had a small stroke and several minis and he was in the first stages of Alz's. That was last summer, so far he is doing okay on Aricept. He knows he has Alz and accepts it. He agreed to getting Power of Attorney and also a living will. He also knows that we will have to move eventually from a 3rd floor condo to something on one level. He also knows that he will, at some point, have to go into an ALF or NH. I just hope and pray he can stay on this even keel for a long time.
Getting lost while driving and not remembering short term memory set us in motion. the long term memory wasnt affected early on but short term was noticeable. my husband agreed himself he should see a neuro just to see as he suffers from high Blood pressure since early and he was afraid of strokes, well neuro did assess him and sent him for MRI which did show some atrophy from past mini stroke, so that then in turn sent him to neurocognitive testing which he passed really well and that first analysis said work related stress and to retire asap. we were happy with that diagnosis til he continued to decline and worsen another set of tests showed memory impairment in certain areas of brain function, back to neuro w/tests and he said i believe its a form of dementia, and/or AD. husband never accepted that diagnosis but did retire and then we started the AD meds after more decline. best bet is to have MRI/petscan anything you can get lined up a good neuro will be able to tell more after testing. its never easy to hear that horrible diagnosis. get your legal paperwork in order. best of luck, Divvi
My wife fought it and was in denile from about 02 and then till 06 she left 2 family doctors cause they suggested ( with my prompting )that she has a memory issue.... In july of 06 I forced her to see a neuro and the diagnosis was made.... I think if we had seen Docs earlier they may have had a harder time with the diagnosis but because she was farther along with the AD the diagnosis was easier because the symptoms were more obvious ... I have followed this site for about 6 month now and I do see that so many have gone thru great pains before a diagnosis is made,, and I do believe its because others have started to look into possible problems ( with memory loss )earlier then we did..... Also Dee was in her mid 50s so I was not aware Of EOAD........ I thought AD only happened to people in there later years,, was I wrong.... Good luck Helen and you have come to the right site for support
Helen, write down any unusual behaviors that you see (with dates and/or timeframes). Get this to his doctor prior to an appointment. Start going to the doctor with him (and he with you if that works better) so that the doctors are used to seeing you and you can talk to them about your husband's condition. With the HIPAA laws no doctor will talk to you unless your husband gives his written permission or you are there at the doctor's with the appointments. Unusual behaviors can consist of personality differences (temper tantrums, sudden mood changes that were never there before), memory (forgets important dates and events), forgets how to do things that he has done for years. I was in shock the first time my husband told me that he couldn't cook spaghetti one night because he didn't know how to measure the water.... My husband started having trouble using the PC for spreadsheets, word documents, etc. At first I thought it was because I had always been better than him at that type of thing, looking back I realize that this was also an early signal. One of the things that really floored me was when we drove from the East Coast to Yellowstone without a problem and yet, he could never remember where our hotel was when we got out of the park (this was very unlike him). Are you arguing more? Think about the types of arguments that you are having - that may also be a clue. In the very early stages, it is hard to get a diagnosis because the problem could be so many different things. Documenting what you see will help you when you talk with the various doctors. I was finally able to get my husband to a doctor for his diagnosis because he had fallen and had a concussion. I do not recommend that you go that particular route.
I noticed that my husband sometimes forgot very important things, was having trouble understanding how to maintain a checkbook (and was constantly late sending out the checks), and sometimes said strange things -- like thinking it was March when it was November, for example. My worries would gradually build up to the point I'd tell him I thought he should see a doctor ... he would calmly and forcefully tell me there was nothing wrong with his brain, and I'd believe him -- he sounded so sure. Then I'd notice more and more little problems ... doing something unsafe while driving, maybe, other stuff like that ... and my concerns would start to build up again.
I finally told him I had to have him see a doctor, I was just too worried. I did not think his regular doctor was right for something like this -- I think the doctor was competent, but he was pretty brusque, sometimes very short-tempered when he was in a bad mood, and just not someone you could talk to about delicate matters. All the specialists in geriatric medicine we found worked exclusively with patients in nursing homes; but one of them recommended a doctor in internal medicine, who turned out to be wonderful.
My husband went along with my wishes because he knew I was very upset, NOT because he thought he had a problem ... he doesn't. Still, he has cooperated with all the testing (neuropsych, MRI, PET scan, etc) and has also agreed to participate in two studies at the Alzheimers Disease Research Center.
He was diagnosed with moderate AD three years ago and still insists he does not have AD. He really does not know that he has memory problems, and sometimes asks me for examples of what he's done "wrong" to try to figure out why I think he does.
Anyway, since your husband is only partially willing to go along with getting a diagnosis, I would suggest that you make appointments just for yourself, to interview the doctors, get more information about the various causes of dementias and some insight into what is going on with your husband and, most importantly, find a doctor you think would be right for you and your husband. Bedside manner is going to be very important. You and he will have to be able to TALK with the doctor ... the doctor must be willing to listen, and must be able to explain things so that YOU understand.
I don't think you'll run into HIPAA problems if you are the "patient" the doctor is seeing. And of course, you will want to be sure the doctor will agree to having you present during your husband's appointments. I don't think that will be a problem, however, unless your husband is going to kick up a fuss. I've just gone along with my husband for ANY kind of appointment, and when the aide comes to the waiting area to fetch him, I just get up and walk in with him. It's very rare that anyone will question this. I've even been present during his Mohs surgeries for skin cancer. I've seen many spouses (friends, family, who knows who they are) do the same thing.
Once you've found a good doctor, then do whatever it takes, including "therapeutic fibbing", to get your husband there.
We had been sent to a neurologist because my DH had problems with hands shaking, and our doc thought it might be parkinson's. It turns out to be essential tremor, basically a very minor thing. While we were there (I always go into the doc's with him, have for a long time) I noticed that neurologists take care of AD patients, so I asked him about it, and right then he gave DH a mini mental. He did demonstrate some loss of memory, we got an MRI which showed some mini strokes, but finally came up with the Dx, Alz disease, mild to moderate. I guess we are still in the middle stages, after about 4 years. He won't go to that neurologist because he told him he shouldn't drive when he gave us the Diagnosis so now we go to a geriatric spec and he likes her. Middle stages are really tough, because sometimes he seems OK, but less and less often.
Today was one of those not OK days. We were at my DD's because both she and her DH had to work. Kids had ball games to be taken to. Well, my DH was so angry with me because I didn't tell him what we were going to do (yes I did, about 100 times). he thought we were just visiting, why do we have to go to the games, Where are DD & SIL, why are they working and not with thier kids, and on and on and on. My DD was becoming upset when she got home and heard him carrrying on, albeit in a low voice (thanks goodness) but angrily, nevertheless. Well, when they both got home, he was almost calm again, and we went to see granddaughter play for a short time before we started home. On the way home, I was playing music from the 40's to keep him calm (XM radio) and his father's favorite song started playing. The next thing I know he is crying uncontrollably, sobbing, telling me how he misses his dad. (My DH is 84 yrs old and his father passed on 20 yrs ago). Finally got home and I tried to distract him, made dinner and got him involved in a few things, but he was totally washed out by then, and went to bed right after dinner. He just doesn't accept that he forgets, and gets so angry when I tell him that I told him something, so I don't say that, I just say OK, but now you know or something. I'm at a loss as to how to handle this. PS tomorrow he'll probably be fine (as fine as he gets nowadays) It's so exhausting not knowing from day to day what it'll be.
I noticed his short term memory problem about 6 years ago. It was just 'something'. Nothing to put your finger on. But it kept getting worse. Then 5 years ago he had a TIA (mini-stroke) and ended up in the hospital where they ran all kinds of tests. They were inconclusive. Then one day he was at the Dr.'s office getting a check up and the nurse called me to ask me a question. She said DH couldn't remember. I just lost it and started to cry. And I'm not a weepy woman. She had the doctor call to find out what was going on and I told him. He said he'd noticed he was getting very repetive but he set me up for an appointment with a neurologist.
I was inspired the way I got around all of that. I said it was because of the TIA and he needed to be checked out further. He was furious but said he'd go if it would make me happy. Well, it did make me happy and I just was very innocent about the entire thing. That was 3 years ago. The diagnosis was Mild Cognitive Impairment. Last November we had to go back for another check up and he had deteriorated into moderate stage AD. He's now on Exelon Transdermal Patch (very expensive). He agreed to take that because he didn't want to take any pills. Six months later he was put on Namanda 2X a day. No problem getting him to take the pills. I plan on asking them to put him on something else besides Exelon in November when he goes in for his next checkup.
If you are wondering, you are probably right. There's something wrong or you wouldn't be wondering. You might call your local hospital, neurology department, and ask them to recommend a good neurologist. Tell him you need him to go with you for whatever reason you can dream up. Good luck to you. Let us know how you are doing. You are in my prayers.
Hi Helen I started noticing 'differences' in 2000, maybe even 1999ish.. My DH is now 69. There is a history of vascular problems and high blood pressure in his family. I thought maybe he had had a mini stroke. His behavior was just 'off' and he was having obvious difficulty with keeping records of the ranch he was managing. He began focusing his attention more to keeping the grounds of the ranch (doing the actual weeding and such) than tracking and recording the activities of the cattle..(his actual job). This was the first little gut twinge that something was wrong.Then, he would open junk mail and sit there reading it for much longer than necessary.
We (our children and I) spent far too long struggling to get answers. Because we were looking for vascular problems, DH agreed reluctantly for the various scans and tests (all negative)..but when they did the neuropsychological testing, he got so angry that it couldn't be completed and the 'inconclusive result' was MCI. So there we were with a label of some kind that proved that we, at least, weren't imagining all this. It was not until 2005 that we got a PET scan that showed 'a pattern consistent with alzheimers'. In fact, in those first years, the doctor didn't really pay attention to me until I asked him how long it took HIM to read junk mail!
I know you will find support here and great suggestions for getting things done. Welcome.
For us, years ago (can't remember how long, but probably in 2000) I had my DH go to get his hearing checked because I just knew he was not able to hear me. He came back grinning saying "they said I hear fine"! He even asked the receptionist to write me a note because he knew I wouldn't believe it! Someone mentioned "arguing alot" & looking back, we did, which was not normal for us. Then, in March of '04, he went on his 'normal' annual 3-day golf outing to the Houston area with a bunch of guys he used to work with @ the phone company. (He had retired in April '01) In April '04, went to a CATs game in Fort Worth--again with some former co-workers. I got a call from one of the wives shortly after those outings & she put her husband on the phone -- he told me that on the golf outing, DH forgot to bring putter to green, and just didn't 'seem right' at times. Also told me that after the CATs game in FtWth, another frient 'found him wandering out on Main St'...that was very scary to me because this is not a good area @ night! He told the guy he was looking for his truck. He had wandered totally out of the parking lot where the truck was parked! But didn't realize it. Yes, he'd prob had a couple of beers, but nothing to make him that out of it. The friend helped him locate his truck & he drove home, but they thought they'd call me to let me know what was happening. My DH didn't say ANYTHING about this ordeal when he came home that night...he just told me about all the guys he saw there & how fun it was to catch up with all of them. After I got the call, I quizzed my DH about these things & told him I'd received the call from his friend. He poo poo'd off the "lost truck" thing saying when he got to the game, the parking lot was empty, but after the game, TONS of cars...made sense to me, but the walking out on Main St. didn't. My DH had gone to the Dr. for annual physicals for years (due to my insistance), and his was coming up in May of '04...I went with him. All went well & when the dr. asked if there was anything else going on, my DH spoke up & said "yes, I'm having some trouble finding the right words to use"...I relayed the rest of the story & the dr. sent us to have an MRI & to a neurologist. The neuro did an MMSE and I was floored! "take this sheet in your right hand, fold it in half, and throw it on the floor"...my DH took the sheet and threw it on the floor. Drawing the clock...no way! Very hard to watch!! Did I even know what Alz was? NO! Even watching the testing going on, I had no idea what the heck was wrong with him. Then the neuro held up his MRI & said there was "severe atrophy" and that he had "Alzheimer's"...my eyes were already filling up with tears. I didn't know what to say so I didn't say anything. I remember the dr. not saying too much either -- just gave us script for Exelon and made a repeat appt & off we went. We went home & I just cried...I had watched Nancy Reagan bury Ronald about a week earlier so I pretty much knew there wasn't a cure, plus what the media had been talking about...BUT to get my arms around the diagnosis...just too hard. We never watched PBS television, but about 2 evenings later, I was flipping around & saw a program starting on Alzheimer's..."The Forgetting - A portrait of Alzheimer's" -- It was informative, and sad...we both laid on the couch together watching it & crying. I count that as my "God Thing" -- having that program to snap me into the reality of it all, and to give me knowledge about what was coming. My DH didn't want to tell anyone! I told some of my family and our daughter, but that was it. Very hard. Then I started trying to "cover" for him, since no one knew...That was 4 years ago...So much has happened in just 4 short years.
Helen, maybe if you haven't already done something, you can go with him to an "annual physical" & that might give you an opportunity to get a referral or have the dr. tell him he really needs to see a neurologist. Maybe type up a note to the dr. before hand or call the office & let them know your husb is not willing to talk about it & maybe the dr. can do a few little things to 'test' him without much fuss about it. And do please let us know how it's going. Praying for you!
I agree with Mawzy, if you're wondering, you're probably right.
I thought my DH had a hearing problem and he does, but that wasn't the reason for his forgetting. It was about 4 years of wondering before he was finally diagnosed.
Even though much of this thread has been here for a while, I seem to have missed it. Then when I read it this morning it is just what I needed today. Things have been going so well the past few days, that I was starting to question the diagnosis. But I realize that we are very early in the journey and there can be times that seem to be normal. Somehow I noticed early that there were enough strange behavior to question her Doctor, and we got to the right Doctors to determine it was "mild to moderate" memory impairment. Fortunately we are not at the point of serious confrontations, etc that many of you talk about. And in these early years it doesn't seem to be progressing much, so you always start questioning if you are over reacting. Even the early years have their problems, as always AD is very unpredictable.
oh, skee, four short years... it's the "short" in that statement that touches me. This last year, the Year of Facing Up to It, has felt like an eternity!
"Helen", I don't have a confirmed diagnosis, probably never will. My story is a bit different from all the rest, as my husband had cancer & had radiation to the brain, which always leads to dementia. (I didn't know before coming to this site.) I kept noticing things weren't right. I started keeping a journal. I questioned my own judgement. But keeping the journal helped me see how "off" things were, so if I questioned things, I could return to the journal to refresh myself & acknowledge that things weren't right. I came to this message board with tons of questions, each of them answered patiently, until I knew I was facing dementia. If things don't seem right, don't second guess yourself. Put anything up as a question and someone will answer.
p.s., find an alias & join us. I was too naive to not give my real name, not that it matters.
We all seem to come to the diagnosis from different places. My DH has always had learning disabilities so communication and math skills were always a challenge. He had highly developed coping skills, which masked a lot. After we married, we divided the family chores by who could do it--I did the bills, checkbook and taxes; he did the vehicle mintenance, yard, and other physically demanding chores. After his breakdown and dx of Schizo-Affective Disorder, he had even more trouble with receiving information and responding appropriately. I think it was in 2001, that he told his Psychiatrist that he was having trouble with his memeory. The Dr. put him on Aricept for 3 months, telling us that if it helped it was Alz, if not it wasn't. All the Aricept did was aggravate the psych issues. Then when he was hospitalized after a 2nd electrolyute drop(results of a false signal telling his body to dump them) the Drs. determined that a psych med caused the false signal, so they had to change his psych meds, and to do so they ran tests, including a neuropsych test. When I recieved a copy of the results. I called to get some clarification of the report. The first thing the DR. asked me was, "What is his Stroke history?" And I answered, "What Stroke History?"
He proceeded to explain that DH had 2 significant Stroke scars in his brain. One is located where it is likely the cause of what we had been told was his familial tremor (small shake in his hands). Since he was released from the hospital after dx, he's been back in 3 times for suspected TIAs. We are doing all we can to minimize chances for more, but I am sure there have been more, so tiny we don't know they're happening, except that he continues to lose ground. Some things come and go sporadically before they finally go. Some just seem to disappear slowly. But overall, he is sliding fairly quickly. I think all the years dealing with the learning disabilities and mental illness masked what was happening, but it also did a lot to prepare me for the day to day. And maybe facing the suicide scare of his breakdown, helped me face what's happening now. After all, if you've worked out every step of dealing with what you'd do if your LO committed suicide,from finding them all the way through the funeral and grief counseling afterward, and for you and your child---every possible step---you can handle anything less that happens. Right now, everything happening is less. And even when he goes, it will be less, because he will have no hand in it--no choice. VaD will win, but I will have done my best to make our loss on our terms.
I wrote this last week - my response to Helen's question.
My husband is a psychologist and 8 years ago said, "I think I have Alzheimer's." EVERYONE, doctors, psychologists, over and over again said absolutely not - PTSD and acute anxiety. Weekly therapy, doctor visits frequently. We were trying to be on top of what ever was wrong and nothing worked. It was a terrible struggle for us.
Finally came the morning when he couldn't put the leash on the puppy. I was uncertain what to so so left for work because I am a teacher and there were children waiting for me. On the way I called his doctor on the cell phone who told me to get him to the emergency room as it sounded like a stroke. I turned around and went straight home. Many tests later and the "best in the North East" neurologist determined it was primary progressive aphasia, or PPA.
By a pure miracle, when visiting my sister in Scottsdale, Arizona, we connected with Dr. Richard Caselli, a world expert in PPA. I could see within minutes of his interview with my husband he had eliminated PPA. After two and a half hours of intense physical and psychological testing, the conclusion was "variant form of Alzheimer's."
That will be two years ago this December. Eight years of struggle and we are still working at it.
Mawzy ... the others are probably sick of hearing me talk about this, but you might consider asking your husband's doctor about trying Huperzine A in place of Exelon. It belongs to the same category of drug, but is reportedly more effective and is more readily tolerated. It is widely used in China, and is just now undergoing clinical trials in the U.S. to confirm what the Chinese report. It is available over the counter here in the U.S., as an herbal supplement for "improving memory." My husband was in the clinical trial -- he went through the double-blind period (you're not supposed to know whether they're on the drug or placebo, but I'm sure he was on the drug) followed by three extensions of open-label (that is, we knew for sure he was on the drug.) My husband's symptoms have held fairly steady during that time. (He's also on namenda, started taking that before he went into the trial.) They have enough data now, so the trial is over (for my husband.) I will be keeping him on the Huperzine A, though, since it has been helping so much.
A two-month supply of Huperzine A costs around $10.