Today's Blog is about our visit to the psychiatrist yesterday. What an experience! I invite you to go to the home page - www.thealzheimerspouse.com - and read the Blog.
I would like to hear of your experiences with a psychiatrist who treated your spouse. Was our experience typical?
Joan- Actually, it suprises me that you see a psychiatrist. For one thing, I've always been told that AZ is not considered a "mental illness." And more than that I don't see how a psychiatrist can help, because AD people cannot understand or come to realizations or make choices about their behavior. AD people just don't benefit from therapy because they are loosing the ability to change; they have no control over their mental processes. They will sit there and go "yes, I understand, ok, uh-hunh" and 15 minutes later they are right back into the total insantity of AD.
I'm pretty new to this site and haven't read all the past discussions - do you see a neurologist? I got the most help from a neurologist who specialilzed in AD and the drug of most help for the crazy anger was Zyprexa.
Sometimes I can barely stand to read these post, because I am so forcibly reminded of where I was 3 years ago - in living hell. Strange as it seems, I'm grateful that my husband is in stage 7.
Joan-I'm sorry that your visit was so long and useless. Even the docs in the psych hospitals around our area are useless. We are so much on our own. We get more education from our members than anywhere else. bluedaze
Joan, I'm with beenthere - after all I have read in the various discussion groups here, I personally would not even bother with a psychiatrist. Unless they have a spouse or a parent who has had the disease - then maybe. Neurologists are our friends. They can prescribe the medications to calm our spouses down (even though yours can't take the meds due to the test), or pick them up, or change the meds if something goes wrong.
I admire all of you who are attempting these tests. Hopefully they will benefit medical science and help find a cure for others coming after us. I know that no test medication will give me my husband back, so I'm not wanting to put him through tests. He hates needles, and is hurt when his primary care physician gives him a couple of shots during his annual physical each year.
Joan, what would Sid do if you just left the house and walked outside around your property when he starting ranting? Or lock yourself in the bathoom with an IPOD (or radio with earphones) and some magazines (or your laptop) for an hour? If he saw that you stopped listening to him, maybe he would get the message... Maybe he loves to get a reaction from you, hoping to change your mind (my teenagers would keep on talking and trying different tactics to get what they wanted and wouldn't stop until I left the house after a final "no"). I wish I knew of something to help you. I'm sorry you had a wasted day that accomplished nothing!
Joan, I felt so bad when I read your blog. Don't you just wish we could tape our husbands from morning til night and take it with us when we go to the doctors?Maybe then they would see what we are going thru each day.
My experience with using a psychaitrist or neurologist depended so much on the actual interests and knowledge of that medical person.
In 2002 her personal physician, a female DO, said she didn't treat dementia and recommended a male friend who was a psychaitrist. He immediately prescribed aricept and seroquel and brought my wife's behaviour under control quickly. He has remained her primary source of AD treatment.
Later, I tried a neurologist for a facial nerve pain problem and found he really didn't know what to do with an AD patient. He was more into ALS, Parkinsons and Eplepsy. He did suggest an anti-depressant to smooth out her mood swings. I no longer use him, but did keep the Paxil as it really helped the mood swings.
When I read about the new drug Namenda on the Internet, I asked the psychaitrist for a prescription. I asked him how should I use a psychaitrist and a neurologist to treat dementia. He replied use the psychaitrist for behavioural things and a neurologist for everything else.
None of these physicians understood the entire AD picture. Each did contribute a medication according to what they did know, but I had to verify that their decision made sense. Not easy. Not simple. I'm a retired electrical engineer and I do understand cause and effect and experiment design and using experimental data to make a decision.
So that's how wife M ended up with Aricept, Namenda, Paxil and Seroquel to treat her AD for the last 6 years. It has worked well.
Joan, My heart goes out to you. I remember last year when I just couldn't get off the sofa & people told me to exercise! I couldn't even make it to the mail box to check the mail. That's when I dragged, literally dragged myself into my doctor's office & he determined I was clinically depressed. He put me on Lexapro, told me it had the fewest side effects of all antidepressants, and within a week & 1/2 I was a new person & was able to THINK. (I had spent the night in a hotel on 2 separate occasions, prior to that, just to get away.) I had the energy to deal with all sorts of things.
I hope you are able to get the antidepressant. I had been given Ativan prior to that, (like Xanax) but that didn't make a dent in what I was dealing with. So I know what you mean about it being like taking an aspirin. Lexapro was a God send to me. I have never been depressed in my entire life, prior to this.
I do what Mary suggested. I just take my keys, and walk around the neighborhood. By the time I get home, he is back on his computer or whatever, and it is like nothing happened. I just don't want to listen to it. I think my husband's train of thought is disrupted by my absence.
It is very discouraging to hear that this psychiatrist would say any of the things his did. Your primary care physician can prescribe Lexapro. Don't think you need to make that long trip again.
Yes, and it is a lonely world when no one but you can see the "other" side of your spouse. I had thought of buying a tape recorder myself.
My best wishes to you, and we all hold you in our hearts, I'm sending you love & light.
Been there, done that--more than once. You don't need a doc to tell Sid to control his anger. Basically he's not a bad guy, but he is terrified, he's fighting as hard as he can to maintain control of his life--wouldn't you?. If the doc understood that, he could have spoken to him about it gently, it might have had an effect. But if Sid gets angry again, don't throw it in his face that the doc said to control himself. In as much as you can, commiserate with his loss. And, absolutely, the doc was wrong to tell you that you should have taken Sid to the insurance office. Why would that even come up for discussion? You did what you had to do to get something done with as little fuss as possible. The doc should tell you--and this is bottom line truth--lie, lie, lie, practice deceit and eschew honesty in order to keep control of your life. And you are in control, full control. You may not like it, but your're stuck with it. The doc should understand that AD people forget what you tell them, they make dangerous mistakes, foolish decisions, turn your world upside down and then blame you for all that went wrong, you have to watch them constantly. You can't be honest and direct under those conditions. Yes, sometimes some meds help some people sometimes with anger, hopefully Sid will be one of them. My DH had to be sedated into being almost a zombie, and that was a sad trade-off, but meds did not help him.
Most docs are into the medical issues, and who cares what they are when your spouse walks outside naked in the snow. We want to know how to take care of them.. We have 100 different questions on 100 different levels but for the most part, we are on our own, constantly learning, in training. Professionals give you 20 mins in the office, see the next patient and go home at the end of the day. That's why, Joan, this site is so important, we teach each other, we're the best resource we have. That may not be a comfort to you when Sid is raging, but it's precious to everyone else nonetheless.
Joan, I agree with all the above posts. the drs speak to our spouses like they are able to control or understand the language put to them. they have a very real 'outter' image they can project and everyone seems to think they are still able to rationalize. not! by the time you are back to your car or less:) that input and conversation is lost to the AD victim. if you were to see a psychiatrist on your own for self issues i can understand that point. i am in total agreement, anthing as a unit or AD COUPLE is a waste of time, psychiatrists/marriage counselors/pastors/etc they just dont get it as we say here. if its just for the unafflicted spouse i would see that could be beneficial- there is no reasoning mechanism anymore once AD enters their lives. sorry you went thru one more disappointment. divvi
I have found that doctors are almost useless when it comes to how to handle the AD person. They do very well with the medical part and can even help with prescriptions to help handle some of the stuff that we see - but the day to day? They don't live it. I actually really like the doctors that my husband has. We found a geriatric pyschologist that did very well with my husband. The other doctor in the office (who is more well known in the state) is my husband's current doctor at the facility. They do have a good understanding of the disease and the effects it can have on a person.
When I want "how to handle" information, I go to this site and the alz.org caregiver site. Between them there is usually someone in similar circumstances that can offer some good suggestions. The best part of coming to this site is that it is spouses and I can really see that I am not alone in some of the stuff I have run into.
Thank you Joan for taking the time to put together this site and maintain it, it helps to fill a real deficit of information for us caregivers.
Joan, I'm so glad you are considering an anti depressant for yourself. It is just too exhausting to be crying all the time. A low dose has made my life more bearable.
I also agree with the previous replies to your post. I really don't think anyone understands what this disease is like unless you spend time with the person 24/7. I don't know if it will help your husband, however, my husband was going through these rages about everyday for a couple weeks. I called the Neurologist & he prescribed Lexapro, just 5 mg. however, I have seen such a change in the last 2 weeks. I am kind of scared it won't last, but, right now the rage has left.
I was absolutely LIVID that the psych tried to tell you that YOU are responsible for Sid's behavior. That sort of thing may be true when you're dealing with a healthy spouse, but when the spouse has dementia ???!!!
And I'm ticked off at YOU that you actually bought into it, with all you know and after all you've been through. Honestly, Joan. If you'd taken Sid along to the insurance company, who knows what sort of he** might have broken loose? Bettyhere and divvi are absolutely right. Stop with the guilt trip and the self-blaming. You're making an heroic effort to do anything and everything you can to help Sid. "Counseling" is a waste of time -- Sid does not have the ability to understand, remember, or follow through.
The psychiatrist is an idiot.
Just remember, there's a bell-shaped curve for every profession. A handful of people in any profession are really good, a few are really bad, most are just average.
I won't presume to offer any advice, because my husband is not far enough along that I've had to deal with anything like you are going through. But I will say how sorry I am for you. When I think about all that you've done for so many of us, I wish so much that you could have an easier path.
Why the psychiatrist? Our neurologist, who is definitely an expert in AD - has been in the field for over 30 years - took on that specialty because of AD in his family - sends his patients to the psychiatrist for the behavior prescriptions. I'm not sure if the neurologist would prescribe the behavior meds. himself.
As for leaving the house during the rages - so far, leaving the room and closing the door to my office works.
As for the recording of the rages - you betcha! I thought of it in the middle of Wednesday night's rant. I had a little tape recorder (I had EVERYTHING electronic - Sid was a Radio Shack manager for 20 years!), but I can't find it. I'll buy a new one if I have to. I am SICK, SICK, SICK, and tired of being called a Drama Queen who exaggerates everything. We were at a restaurant with friends one night, and the next day, one of the women called me to say that even she thought I had been exaggerating, but she saw how mean and angry Sid was that night, and realized what I was going through. He was MILD that night compared to how he can be.
As for Sid's public personna, my social worker said that because he keeps up with current events (watches news shows constantly - the same things are repeated 25 times a night); is interested in current events, and can talk about what is going on in the world; because he is so good at socializing, no one would ever guess he had AD, and therefore, I look like the idiot drama queen.
Sunshyne - yes, I know counseling is a waste of time for an AD patient. I went because the psychiatrist can prescribe the meds. Oh, and I forgot to mention, I DIDN'T take him to insurance company initially, because my social worker advised me not to. She said to get all the information first to find out what was going on, and then tell Sid. Which is what I did.
And to whoever said that he would forget what the psychiatrist said by the time we got to the car - you are so WRONG. He forgot most of it by the time we got to the elevator. LOL
And you know what? ONLY SOMEONE WHO HAS LIVED WITH A SPOUSE WITH AD CAN UNDERSTAND. After I get the anti-depressant for me from my primary care, I will use you guys as my psychiatrist.
Oh, and one more psychiatrist story - When Joel - yes, the wonderful Joel who handles all of my website technical mistakes remotely from California - was 14 years old, he flipped out. Hanging with the wrong crowd; stopped doing school work; heading toward drugs. Long, long, miserable story. The first counselor I took him to said that HE, a 14 year-old who was spiraling out of control, should be allowed to participate in the decision making as to his rules and punishments. (Years later, Joel told me that he had that guy wrapped around his little finger with no trouble at all!) Then we went to a psychiatrist, who sat and looked at my 14 year-old, messed up in the head, out of control teen, and said - "Well, when I was your age, I hung around with kids who were into drugs, and they all turned out okay." That was the last visit to that psychiatrist.
The moral of the story is that I know enough to take psychiatrists with a grain of salt. Just give me the prescription and let me out of here.
Joan, We've had some of those days like you had. To much time and energy invested with nothing positive gained. My DH sees a geriatric psychiatrist for his behaviour meds. Although the cause is not "mental disease" per se, the meds are the same, the side effects can be the same and the management (with the right dr.) are the same. My DH does have a history of psych problems that preceded AD, but I am confident that is not what we are treating now.
During his first hospital stay this year (psych unit for med adjustment), although he was obvously not makine sense when admitted, they continued to diagnosis him with bi-polar disease. My DS and I were adamant that we (both personally and with DH) had been dealing with that for many years and this was not the current issue. We got a copy of his records and his diagnosis was changed at some point from bi-polar to mood disorder secondary to AD. But it is a battle to tell a dr. (with a history of psych problems on record) that this is different.
From my experience, the longer a hassle (time, Dh's mood, parking, etc), the less able I am to be a stronger advocate for my husband. It's just a question of energy. And, we are in the position of hoping that every dr. visit (as we know, there are so many as it is) gives us optimism that some help of some sort with result. I agree, dr. is an idiot. Taking DH to insurance was not in anyone's best interest. You were just so exhausted from this hole mess even before you went to the drs.. With the additional wait, paperwork, and dealing with a new dr., there is no way you could have had the energy left to tell this dr. where to go. The added disappointment of going thru this with out getting any help is certainly frustrating.
I applaud everyone who goes thru the effort to get a LO into a trial. And to try to balance the requirements of the trial with the help you and/or you husband need, is certainly a qualification for sainthood.
Joan, I can recall being told by someone at church how good my husband seemed to be doing. (I wanted to tell her-then you try living with him for 24 hrs.) That same person , upon hearing that my spouse had gone into a nursing home said to me" Well I didn't think he was that bad. Seems a little soon ." How little other people know. And even though I kept telling my sons who live in other states how badly dad was doing, it wasn't until one of them was here under the same roof that he realized what I had actually been struggling with. It wasn't long after that the neurologist suggested it was time to find a "home away from home " for him, so we did.
Sandy - Yes, he was 58 when he started showing symptoms, 59 when diagnosed. He's just plummeted in the last year - partly, I think, because of meds he was given to control his combative behavior when I was forced to place him. The doc in this case (another psychatrist, btw) gave him Tegretol, which is an anti-convulsant they use for epileptics. It made him happy and compliant, but much worse cognitively. He stopped walking - couldn't balance - and stopped making any kind of conversational sense. I hated that drug for him and finally got the NH staff to take him off it with the help of Hospice, but by that time the damage had been done. Once AD victims forget something - due to meds or whatever - they never get it back. So I think he progressed a little more rapidly that he might have otherwise, but that's water under the bridge now. He would have wound up in this same place sooner or later; it just turned out to be sooner. With the help of some grief counseling I am starting to learn not to second-guess myself.
Joan, what a horrible ordeal you had to go through! Waiting 3 hours to see a psychiatrist is unbelieble- do they know anything about what exacerbates stress?? I sincerely hope Sid will be able to take something to calm him down and still participate in the trial. It was hard enough getting accepted for it without another possible road block. My heart goes out to you!
Joan, I'm sorry that you have had such a bad day...I agree with getting on an anti-depressant for both YOU and hubby. My husband is taking one & it made a big difference; and reluctantly (3 years into this) I decided to as well & it really has made a difference...I can "handle" things better most days (unless I'm extremely tired), and I don't cry all the darn time anymore! Lexapro works for me! And for hubby...And, fyi, here in TX, we got from husband's neruologist, and I got mine from OB dr...no psych dr. involved! Mostly I think because the dr's we see "know" our issues of dealing with Alz, and are understanding, and KNOW what will help us cope!! Praying for you and Sid, Joan! xoxo
I know this is going to sound strange, but I'm having my husband's family doctor handle ALL blood testing and ALL prescriptions. I tell the specialists they can start my husband on a new drug, but all refills will come from the family doctor.
Why? It turns out that the blood test I had to pay for from last year's neurologist's visit were for tests his regular doctor automatically has done on a regular basis. And they were going to do repeated testing again this year.
And as for the drugs, this way one doctor knows about all the drugs. If there is an ugly interaction he can catch it.
I'm also really big on printing out drug lists every time either of us goes for doctor's appointments and tests. And every once in a while I hit the jackpot like last week's addition of magnesium so I won't have foot cramps in the middle of the night.
Starling - Have you tried "tonic water" for the cramps? I have heard that is a wonder thing!
When we started the clinical trial @ UTSW in Dallas, we changed PCP's from an Arlington Dr. my husb had had for years to a 'geriatric' PCP @ UTSW. Now ALL his dr's (less dentist) are @ UTSW -- neurologist, PCP, urologist...That way, ALL meds, notes, etc. are all under "one" system and they can all 'see" what the other has done. There is also a system in place for communicating with the dr's via email system -- "MY CHART" is the system. I can write & communicate about script refills, issues I don't want to 'talk about ' in front of my husband, questions for dr, etc...all without actually calling into the office, leaving messages, waiting on return phone calls, etc. It is very covenient & has saved me alot of time & worry. Not sure if any of you have such a 'system' in place, but might be worth checking out.
Frankly natsmom, it sounds like heaven. The doctors here are very good about sharing as long as they all talk to the family doctor. He takes the info in, and sends it out again. But that MY CHART system really does sound like heaven.
We have that system like Natsmom here in Tx where we live too. all our drs are under one 'roof' and the computers share all info about tests/other dr visits /labwork, current medical info. its wonderful and when i have to see one dr they have immediate updates and can download any info. this system is super pricey but its getting more common now in larger medical complexes. i can also send emails to any dr at the complex..its very convenient. divvi
Joan - I just read your blog and can definitely feel for your frustration. My situation is so different from yours, but I have done all I can to get some sort of help for our situation. Because of Hank's rating on the Karnofsky Scale used by Hospice here we don't qualify for any more than three weeks of Home Health. The issue I really haven't talked about - the high PSA doesn't matter since it takes about as long to die of prostate cancer as PD and AD. So, I've done all I care to. I'm just glad to have someone come by for two more weeks. When I asked the Home Health nurse if she thought after seeing my husband that it would not be surprising if he lived six or less months she agreed - BUT, rules are rules. And really, I don't need help watching someone sleep or dealing with whatever agitation there is by getting out a pill. I don't have the anger to deal with as in your situation. I just have a spouse who is weak and seems to be fading away.
Joan, its like taking a ride back in time... Sid is where Lynn was about 4 years ago. I knew something was horribly wrong, but to the rest of the world he seemed fine. I too taped Lynn, it did help his doctors, but it had a horrible effect on Lynn when he saw it. It was NEVER my intention that he see it, but he found it and it was just awful. That was the first time I was truly afraid of what he would do if left alone. I can't imagine the hell our LO must be in at this stage, the moments of clarity must be torture for them. Heart breaking *sigh
I found out the hard way, even if you offer proof to family and friends who are not willing to admit things are as bad as they seem, they will think you "fixed" or "staged" the tape. Turned it on when he was having a really bad night, had done something to really upset him, before you turned it on. Still amazes me how blind people can be. Now of course Lynn is beyond that stage, no one has questioned his diagnoses for a few years. But not one of those SOB's ever said sorry for their attitudes or lack of help. Don't think I will hold my breath waiting for it either!!
I can't believe you had to wait 3 HOURS to see the doctor! I never would have made it that long! Say nothing about Lynn. He would have walked out for sure. We are lucky in that our Neuro prescribes all of Lynn's medications, including his Seroquel, so we never needed to see a physiatrist for anything. I had to chuckle, as I think this board does more for all of us than the whole lot of physiatrists ever could!!
I hope you follow through with your doctor and get some medication for you. I have had many TIA strokes and I should have sought help for myself much sooner. On the bright side, this stage will pass... I have to say right here and now is the best I have felt in years! The later stages though hard in and of themselves, are easier to handle emotionally I think. Lynn is doing amazing on the Seroquel! He is such a pleasure to be around now. Caring for him is so much easier and the stress levels have plummeted. Everyone who knows us has commented on the change in his personality. I hope Sid will be get the same results as Lynn has.
To been There ,,Our DH's have similiar stories, I had a3 psychiatrists for my husband , only one tried to truly help him. And the last one almost killed him with anti psychotic drugs and other medications which did him and others caring for him no good and probably escalated the dieasee. She experimented on him while I payed $1000 a month for drugs alone plus her fee. He was in a NH and they wouldn't keep him if I refused her services. He supposedly had agressive behaviors but only exhibited them when the staff attempted ADL activities. (aid to daily living , bathing, changing for incontinent etc.) They didn't approach him or change environment corrrectly, would just grab him and try to overpower him. He not knowing what was happening, would resist. All CNA's were women and naturally he did not want a women doing these intimate activities with him. Finallly at the home where he is now, a VA home, the staff took him off of these drugs, assigned a male CNA to him, and did environmental interventions with him. This did away with the aggressive beha vior. I had put on his chart t hat no psychiatrist was to get withhin 10 feet of him. I do not think psychiatrists are the proper physicians for alzheimer dementia patients. They are ill as a result of physical causes and I now have a neurologist as his Alzheimers per son. He also has a primary care physi cian.
Carewife-I removed my husband from a psych unit for much the same reason. The staff overpowered him and put him in restraints when massive doses of haldol didn't work. Reminded me of One Flew Over the Cuckoo's Nest. We really do have to be active advocates.
Joan, honest. If your neurologist won't prescribe the right drugs, your family doctor is more than capable of doing so. If your husband has other diseases as well as dementia, the family doctor ought to be monitoring all of the prescriptions for you in any case. You do not have to go back to that awful office ever again.
Anti-psychotic meds are almost standard for dementia patients at certain stages of the disease. I'd expect any doctor out there with dementia patients to know about all of the ones that get tried.
our primary dr gave me ativan and 'smiled' when i said 'whatever they gave him in the ER worked fine when hes aggitated'-can i have some PLEASE!""??? i have never used it since that time in ER a yr ago but i wanted a backup plan just to be sure when i got him home. he does well now he is off the namenda and all alz drugs,and not hard to manage at all. there are so many choices to try for an aggressive spouse, its a hit/miss some will be better than others, but its a downright necessary step with AD to get them on something if you are having anger/aggressive behaviour issues -divvi
Joan i just read the entire blog. i am not sure if my DH was in a state as your Sid is i wouldnt pull him from the trials and just administer the recommended drugs now. he may could participate in a later trial after he was under control. your SANITY is on the line here and i dont think that has any cost attached. in my opinion the trials can wait you need some help now. divvi
Well, davvi has more guts than I have, but I felt the same way after re-reading the blogs this morning. Just didn't have enough guts to stand up and say that.
I know how important the trials are for you, but ... Surviving is more important.
Believe me, I seriously considered forgetting about the trial. I felt getting the depression and anger under control was more important. I talked about it with the doctor. It took so long to find a trial that would accept Sid with his diabetes, that the Dr. didn't want to let it go, since we were so close. And Sid desperately wants the trial - it's giving him hope, which I don't want to take away from him.
We're going down for the first infusion on Monday, so it will be no more than 2 weeks afterwards that he can go on the psych. meds. I'm okay with that. If we were talking months, I wouldn't be, and I really would go for the meds. first.
Thanks for the input, and don't ever be afraid to express disagreement. I welcome all opinions as long as they are expressed respectfully.
Joan - Hopefully the wait will be worth it to be in the study, AND get the depression & anger under control. Hang in there! You've come so far!! Just 14 more days!! Mark them off on the calendar in BIG RED LINES if it helps to see the light @ the end of the tunnel!! xoxo
Comment AuthorAlice CommentTime 7 minutes ago edit delete
We are going to a psych consult next week. Our neurologist does not prescribe any drugs such as antidepressents, etc. only Alz. drugs. Our internist has prescribed some things but we are still having trouble with severe nervousness, agitation and even panic if I am not around. Please give me any advice on questions I should ask the Dr. and what I should expect from this visit.
Alice - please read the blog on our psychiatrist visit - http://www.thealzheimerspouse.com/Psychiatristvisit.htm
Neurologists generally do not prescribe the antidepressants or antipsychotic drugs - they like to get an official diagnosis from a psychiatrist, and have him/her do the prescribing. Psychiatric therapy for an Alzheimer patient is useless, because they forget what the psychiatrist tells them to do as soon as they leave the office. The psychiatrist's main function in these cases is to write the prescriptions.
ANY one who would hold you responsible for the behavior of a person with AD isn't in touch with reality. Find someone who is.
I had to fight my AD husband to change doctors when the one we were seeing kept saying that he was dealing with PTSD and years of therapy weren't making a dent and things were getting clearly worse. After lots of calls and searching and talking, we hooked up with a psychiatrist who works at the geriatric center of a major hospital. He does meet with my husband twice a month. A. does remember what is said, AND?Or remembers the tone, support and care of a fellow professional colleague. It affirms him. I join in for a few minutes each time to check in, then go to my own therapist! He recommended her and he recommended the physician we now see. I check in to make sure they are all talking to each other and to us, frequently.
My husband and I both take antidepressants. We hate it, I resent it, but it the only way I can manage. So be it. I am not in charge of the Universe, I just do my best. If lexapro doesn't work (it doesn't for me) find something that does.
Bless you all, bless us all.
Alzheimer's is pretty awful and yet there are other diseases that are as bad. Remember that we have brothers and sisters in the world that are caregivers to other demon diseases. i mentioned to someone today that my husband has AD when I realized she couldn't mention the illness that has taken a mutual friend - Alzheimer's. She apologized to me for bring it up and I said, "No. It has to be said so that people face it and know that there is a fight to be fought for those we love who can't fight for themselves and those who are yet to come."
Not sure if I have much to offer those of you who have already posted, but maybe a lurker..... We actually started with a psychiatrist.My daughter got married in Ohio where we have lived for many years, but moved from 3 years earlier. I had been noticing increased strange signs in DH but thought midlife crisis, work stress, falling out of love, etc. But the weekend of the wedding while we were back in town, DH got lost going to Target and never made it to daughter's house to take her to the church. In fact, he had groom's tux in his car. Craziness, turmoil, drama. There were other incidents that weekend and when we returned home, I called a friend who got us in with her psychiatrist in D.C. immediately - on a Saturday. He worked with DH for 3 months thinking it was severe depression, then psudeo dementia and then when none of the meds or therapy - 3 times a week - were working, ordered neuropsych testing and sent us to the head of neurology at GW University for further tests and to confirm his suspicion of AD. DH has never been able to talk about the diagnosis even after 4 years. Shrink said he was the most "emotionally constipated" man he had ever met! He tried to help him to understand that this was real, but DH kept telling the same stories over and over. Eventually, I regained my composure, moved us away from the D.C. area to be near family and have been 'coping' ever since. So, our psychiatrist story isn't awful, but in the end he wasn't able to help much. He did start DH on Aricept and a mild antidepressant and gave me a prescription for Larazapam which got me though many days back then....
My DH has been seeing a psychiatrist for years to treat depression and anxiety. At some point in time, the Alzheimer's disease crept in also. It was actually his psychiatrist who recommended and referred us to a neuropsychologist. First, he recommended a sleep test (due to severe sleepiness on a new med) and sleep apnea was diagnosed. When things didn't resolve and actually got worse after appropriate (and ongoing ) use of CPAP, that's when the neuropsychiatrist came into play. We have since moved and after a few misses, found the right dr.-a geriatric psychiatrist recommended by our neurologist. Psychiatrists manage meds, even where there isn't AD. This is generally done by talking to the patient (and/or caregiver) as to how they are doing, what problems have come up, etc. A psychologist or therapist would do more "talk therapy". I strongly suggest the caregiver be there with their spouse, since the dr. might not get the accurate picture of what is going on (certainly doesn't with my DH most of the time). I will say that for about the last year my husband started a rant as we left, telling me I was exaggerating, taking over his appt. time, etc. Now he just asks me to go over the med changes planned.