I haven't visited in a while. I am almost 53 and DH is 56 ½. Things are verry slowly progression. Last month, DH had MRI of his complete brain. Both to check the progressing of his pituitary gland tumor and to see if there were any other brain abnormalities. (I had visited with the nurse twice this year to get my feelings about possible FTD on DH's chart.) She filled the doctor in and he ordered the complete brain MRIs. The tumor has not grown in two years and that is very good news. There was also nothing on the MRIs that showed any brain problem. DH interacted great with the doctor and did not appear to have any problems. The doctor is continuing to treat his other problems. I'm sure that the doctor still doesn't have a clue about the other problems because there was nothing obvious in DH behavior at the appointment. This can be the most frustrating part of this whole thing.
Following the appointment, as soon as we got back to the house, DH asked me what month it was. He truly did not know it was January. He got to spend three days out of town with his cousin recently. DH told me that while he was fishing that he couldn't remember his name and had to look at his drivers license to remember it. There are other memory problems which are obvious to me (and sometimes DH) but not to anyone else. Son (age 30) has seen a little bit and understands.
The main problems are with mood, reasoning and behavior. He will act out over almost nothing and not understand that he is acting unreasonable. In addition to the Full Moon, he is really affected by random telephone calls and other obsessions. The kind that start with a recording or show up Unavailable on the Caller ID. There was a recorded call yesterday that said that “our credit card was current and to press 9 to find out if we quality for a rate discount.” The problem is that we don’t have credit cards any more. He now thinks that I am hiding a credit card. He thinks “why else would they have called us unless we have a card.”
We also have many problems related to sexual stuff. Because DH is so paranoid with relationships, he even thinks the dogs don’t love him sometimes. We also can plan an evening and have it ruined because he get sundowner in the early-evening. Last night was so frustrating. He made great plans for the evening, and cleaned the house, made dinner, etc. Then, after dinner, as I was headed to the shower, he wanted me to watch The Wheel with him. Then he wanted me to hem my jeans. I told him that the jeans could take up to two hours and I would do it another night. I reminded him that we had plans. Then he wanted me to watch videos that I took on our camera. That took another hour. Then our TV stations went out due to a power outage. He obsessed on that for quite a while. During this time, I tried to get the TV shut off. I tried to get him to bed. Nothing worked. Then he told me that it got too late, it was 8:30 and that I didn’t really love him anyway. It went on and on. This morning, he wants to move into the extra bedroom because we don’t have a marriage anymore. He truly thinks that I either have a boy friend and am hiding credit cards from him and lots of other stuff. And that these are the reasons for all his problems.
He also brought up that I must have so much fun at work that I don’t need him anymore. This kind of stuff goes on and on. When I left for work this morning, he told me that he was going to shut his cell phone off because I don’t like to call him anyway.
How do you all keep your “wits about you” and not get angry? I am really good about not reacting but it is so hard. Thanks for listening; I just needed a good rant.
For those of you who are new to the board, there are several Marys. I am Mary in Montana and sign with Mary!!
Mood, reasoning, and behavior. You summed it up perfectly. That's what signaled to me that SOMETHING was wrong. I never suspected AD or any form of dementia during that period. When it is a younger person (my husband was about 59 when this started, but yours is younger), doctors never consider dementia. It is VERY FRUSTRATING until you finally get a diagnosis. Then begins the process of learning about all of it and trying to adjust to it.
Keep my wits about me? Not for a very long time. It took 3 years before I stopped fighting with him about anything, because I finally realized my husband wasn't coming back, and I just had to nod my head and agree with this husband that AD gave me. Or else I would be the one in the padded cell somewhere.
Mary, Your husband sounds like mine in the beginning. He was losing his memory more each month. He always done well on the mental test...I think in the beginning the doctors thought I was imaging things...I wasn't. He started losing his memory & having absence seizures at 50. He had 5 MRI, CT Scans, Lumbar Puncture, many Blood Test, Tests concerning the heart & 2 PET Scans. Only until the last PET Scan 2 years ago this July, that he was diagnosed with Frontal Temporal Dementia (FTD) You ask how you keep "your wits about you & not get angry" You can't sometimes, I have finally come to the conclusion. You are going to get angry at times, this is such a frustrating disease & you lose your patience. As I have learned from this board, you can't help being frustrated & loss are tempers, we are human. Remember we are always here to help or listen.
Mary, I hope this helps. Of all the books I have read on Alzheimer's & dementia, the BEST one in my opinion, in terms of coping with emotions is Coping with Alzheimer's, A Caregiver's Emotional Survival Guide. I ordered it from Amazon through this site on Joan's main page. It is by Rose Oliver and Frances Bock. It helps tremendously in showing you exactly how to redirect your emotions. So many good tips. Well worth reading. (And rereading!)
Mary, have they ruled out the pituitary tumor causing any of these symptoms?
Has he had a neuropsych workup? The testing that takes 1-3 days makes it very hard for them to hide the memory loss or even some behavior problems..
Has the doctor believed you and him enough to put him on any meds at all?
I would copy what you wrote here and send it to the doctor. Let him see what just one day is like. Maybe keep a journal for a week then send it to him. If he won't take you seriously, you may have to fight for a different doctor or referral. If you hb is willing, fighting for a diagnosis is our job.
Please keep venting/ranting here as it is good for you to get it out.
Thank you. I had never heard of that book. I just put the link to it up on my home page - www.thealzheimerspouse.com- and ordered one for myself. It sounds like something I could use right about now.
You're welcome Joan. It is a great book and not one I had seen mentioned on this site. I think anyone dealing with dementia would gain from reading it. I'm sure you will enjoy it! (Let me know....) :-)
Thanks to all of you. It helps to feel included and not alone. Kitty, I will look into getting that book; it sounds helpful.
Charlotte, what the doctor tells us is that many things can happen physically when hormones are goofed up. He feels that this accounts for many of DHs other problems that we can't find a cause for such as joint pain, achy for no reason, etc. The doctor is doing a good job of treating his body but has not seen the problems with his mind. And DH doesn't think that there are any problems so the chances of seeing another doctor are slim (at least at this point).
I'm not sure if I am happy or not with the MRI results. It didn't show any problems. So, no water on the brain or other problems. DH has MRIs every two years to check the growth of the tumor.
You wouldn't believe what I went through to get him to agree to this set of exams. He has such a problem with any doctoring. I had hoped that the MRIs would show something to the doctor that could explain his non-physical problems. I will continue to suggest to DH on his really bad days that perhaps he should see another doctor.
So, what this does is put us in a couple more years of "limbo land." Unless it progresses more rapidly, I will continue to play the game and keep trying to win. One thing that I haven't been doing and that I need to do is keep a journal. Whether I use it in a month or a year, it will have impact with the doctor.
Mary in Montana----I identify with your comment about more time in "limbo land" not knowing for certain if what is going on is dementia or not. My DH has some other health problems so when I first shared concerns with the dr, he figured the symptoms were part of the other health problems. Then we began to observe more cognitive problems and I thought it must be brain fog (which can be part of one of his conditions). I suggested to hubby that he book an appointment with specialist . . . no way, as far as he was concerned I was imagining things and there was no need to be concerned. A couple of physical things got worse but in his mind, those symptoms were stable and after all, he should know . . . it's his body (so he told me). I again shared brain fog concerns with our dr who asked me to give some examples . . . it was then that the dr said the examples I shared didn't fit brain fog pattern but rather could be the dreaded 'd' word. Dreaded 'd' word, I asked-----what is that? Dementia. I hadn't even thought of that possibility but the dr said what I'd described were clear examples of loss of reasoning and judgement. At first I clung to the brain fog theory but as time passed, more changes occurred and as I did more reading, I think it likely is dementia (probably FTD). Last year, the dr. talked to my husband about the possibility of cognitive problems . . . suggested a referral and testing but DH refuses . . . because in his mind, nothing is the matter. From reading, I realize this could be due to him having lost insight (anosognosia) about what is occurring.
In response to something I posted last month, Joan suggested trying some creative ways to get him to agree to a referral . . . a couple of approaches I tried since then have not gone anywhere. So now try something else. It's discouraging because I know that the whole process of getting an appointment, getting tests etc will take a long time.
I do have 3 friends in similiar situations----one is younger / one is my age / one is much older than me. (I'm mid 50's and hubby is mid 60's . . . been noticing symptoms for at least 5 years although more pronounced last couple of years). Two of my friend's husbands have been diagnosed and one is in middle of testing. At least I have some friends who understand what I'm experiencing . . . although as my older friend said last week----this certainly isn't what she anticipated in their later years. We say "for better, for worse, in sickness and in health" but we optimistically hope for the positive "better" and "health".
One more thing . . . one of my friends suggested keeping a journal of symptoms etc. I do sporadically but it feels like I'm focusing too much on the negatives when I record the problems/symptoms. So I add to the file periodically but not all the time. I need to balance it with a list of thankful items . . .
Mary, we went about 3 years without Dx, because neither the first neurologist, nor the psychiatrist, nor the second neurologist wanted to think a guy in his 50s, otherwise healthy, could possibly have AD. So different guesses were: depression w/pseudo-dementia, low testosterone (it wasn't,) Lyme disease...blablabla. Finally, the third neurologist nailed it, then confirmed it by ordering the right tests. I recognize the "messed up evening plans" problem. That was kind of the beginning of the end for us. Everybody was feeling good, the required pill was taken, then he'd just sort of shut down mentally. It was kind of a bellwether dynamic, which marked the onset of my transition from partner to caregiver.
I understand you hoping it was brain fog. My husband started showing decline in cognitive abilities and changes in personality after he had been treated for bladder cancer with radiation and chemo. Even my husband knew something was not quite right with his brain. We thought it was chemo-brain (with possible agent orange involvement) but as he continued to decline it became clear to me that something else was going on. It took me three years to finally do something about it. When I took him to his PCP and explained what was going on, she immediately sent him to a neurologist to be tested for early onset dementia. Blood tests showed nothing metabolic and then the MRI showed the brain atrophy. This is when I first heard the term frontotemporal dementia (FTD), neuropsych testing agreed. He was 58 at the time of diagnosis (now 60). That is where we are now.
A journal can be of great help. It does seem like it would be only negative things, but these are the changes you notice and the reason why you want a diagnosis. There is a good book about FTD called "The Banana Lady and other stories of Curious Behaviour and Speech" by Andrew Kertesz. I saw my husband is many of the examples given. The book is available on Amazon.
yep - - mood, reasoning and BEHAVIOR. Others seen him and seem surprised that he is so "lucid". The mood, reasoning and behavior started about ten years before we got the diagnosis of AD.
A friend mailed a copy of "The Thirty-Six Hour Day" to me....... also a survivors guide for care-givers. Since my days are actually 48 hours long and none of those hours are currently earmarked for recreational reading I have no idea if the book is any help.
Thunder, I started to read the book but gave up. It is not written by people who are hands on caregivers. I have learned more from this site than from ANY book I have read. You might get more out of it than I did so don't take my word as gospel!
My husband's MRI showed nothing. Then we had a brain-SPECT done which showed deterioration. If you have a facility nearby that does brain-SPECTs it could take years off a diagnosis.
I feel your pain!! I am 44, DH 56. He was diagnosed about 2.5 years ago. We had several MRIs that showed nothing. They thought it was depression, they thought it was vitamin deficiency, at one point they thought Mad Cow Disease!!! Finally I did a little research and read about PET scans. I asked the doctor if we could get one and he said sure and BINGO! That is what pretty definitely showed the Alzheimer's. So you might see if you can get one... our insurance pre-approved ours and then after he had it said "oops, sorry, that wasn't necessary" and I spent about a year fighting them on that (and finally got it approved... AGAIN.) But it was so worth doing, I think. Medicare pays for it - but not sure if your DH is on Medicare yet; mine is not.
We've also had some neuropsych testing and that really shows the problem too. Sometimes insurance won't pay for that either BUT in our state if they are on SSDI, the Social Security office will give them some kind of voucher to go to an employment agency to see if they can find a job and they will run them through all the neuropysch tests FOR FREE. At the end of which the conclusion is that they can't work. Not sure what they have in other states.
Yes, as in Shannon's case, the PET scan and neuropsych testing were the undeniable diagnostic tests we needed, and...similarly again...everything from depression to Mad Cow was considered by previous docs.
Mary in Montana, My DH had the neuropsych test. It was 3 hours each on 3 consecutive days. He was exhausted after the 3 days. We saw the neuropsysch one more time after a few months and he wanted DH to do them again. He flatly refused. I really don't know what kind of tests they were because I wasn't allowed to be in there with him but I also don't know what they proved. We had the dx of AD so I don't know if the tests were worth it.
It was explained the purpose is to see what areas of the brain are affected and how badly. Also, how badly they are affected. My hb had his second last fall and walked out - it was just too painful for him to see how little he could remember.
Too bad the doctor or someone else he respects can't get him to take further test to rule out other 'organic causes' - one of those lies that is often necessary.
Thunder and Jean--The 36 Hour Day is actually an excellent reference book, but that's what it is. Don't try to read the whole thing at once, it's overwhelming. Just keep it on hand and look up issues as they come up. It was one of the books that gave me the idea my husband could go to daycare, even while he was still in the early stage, and could be told he was a volunteer.
A thorough neuropsych evaluation involves many different types of cognitive tests, and narrows down which functions are most affected. The value lies in discerning whether the pattern of deficit a patient exhibits follows an "alzheimer-like" pattern, or points to a different type of dementia.
CAT scans and MRIs are useful for showing the structure of the brain. (The difference between the two has to do with type of imaging used, and certain anatomical parts are better examined with one or the other.) But, speaking of MRIs for example, it will be used in dementia patients to determine things such as size/shape of the brain (has is shrunk?), spotting of abnormalities such as tumors or other structures that are amiss, and identifying bleeds, or areas where a bleed has occurred. Often patients in the earlier stages of AD show no MRI abnormalities at all. Later, comparing an new MRI to an older one, shrinkage or bleeds may be noticeable.
A PET scan (or a SPECT scan--works somewhat differently, but similar,) shows metabolism abnormalities. As this applies to AD, the PET scan will show which areas of the brain are metabolizing glucose properly (in other words, doing what they're supposed to be doing,) and which parts aren't. The pattern of reduced glucose metabolism in certain areas resembles (depending on the colors used in the pictures) a fully "lit up" brain (a brain that's working) versus a brain where some of the "lights" have gone out. It's not really about light, it's about glucose being metabolized or not, but the pictures are can be very graphic and striking when you look at them as a lights on, off, or fading type of thing. Like the deficits revealed by neuropsych testing, the pattern of metabolic deficits displayed by the PET scan can be "consistent with Alzheimer's," or maybe point to something else.
Before diagnosis of FTD my husband had all the blood tests to rule out metabolic disorders and then he had a CT scan. The CT scan came back normal but his behavior was not right. He was then sent for a MRI--this showed atrophy of the frontal lobes of his brain which brought up the FTD diagnosis by the neurologist. My husband then had neuropsychological testing. His was done in one day over a period of 6-7 hours with breaks. These are cognitive tests which test the different parts of the brain, plus I was given a lot of questionaires to fill out with my observations. His leaned more toward FTD than Alzheimers. He had a second set of tests (much shorter-only 2 hours) which showed he had declined about 20% from the previous year's test and really seemed to rule out AD.
A spect scan was talked about but as all the other tests seem to point to FTD, the doctors didn't see the need to put him through one.
My wife's MRI and PET scans were normal. The last surprised the neurologist seeing her at the time, he expected major atrophy based on her behavior. The neuropsych exam showed major problems but they were attributed to traumatic brain injury, we didn't suspect bigger problems until a few months later. Scans can show damage only when it reaches a certain point so a clean scan can be frustrating but can help eliminate certain possibilities, such as a tumor.