Today, I just feel confused. On one hand, my DH was diagnosed two years ago with MCI, but underlying EOAD? I went to UCSF-Alzheimer and Memory Center. At that point, I was told they would send a report to DMV, and it would be up to them if he continued driving. I was also told he needed to quit working, (he worked as a laborer in the union, heavy equipment) and so two years before his full retirement, he stopped working, even though we didn't at that time feel he was incapable of working, they didn't want to take a chance. Most of the changes I had seen were with personality changes, some pretty aggressive behavior, anti-social, and pretty hard to get along with but he still seemed capable of doing his normal work. SO, our lives turned upside down. As a result we had to move because we couldn't even afford our house payment, and couldn't sell our house because of the recession. We moved to a place my Dad had vacant, an old mobile home on a piece of property 30 minutes from about anything and an hour and a half from my children and grandchildren. Okay, no now, we just went to UCSF again, for a yearly check up, and the moved his diagnosis, this time to "dementia". Now they really don't want him driving, so are sending another report to DMV suggesting he doesn't drive which is fine. I don't want him hurt or to hurt anyone else. They had some other suggestions, but...my confusion is why so many different dx's. The first visit, the doctor emphatically told me "you do realize we think he has Alzheimers right"? But again, this year I am not really getting a clear picture of what the dx is. The doctor filled out papers for SSDI, and we got it no problem, I thought based on the DX of EOAD. I know there is definately changes happening with him. He did tell me he had some problems with the tests this time...some sort of papers with colored squares, and color words in different letters on them? Not sure what that test was and I am trying to cope with all that I need to do, but I just don't understand what he has. I asked the doctor this time what stage they would put him in, and she said, "oh, I hate the stage thing, everyone is different, so there is no way of knowing. But we are changing him from mild to moderate". Okay, mild to moderate what? Dementia? IS that really a diagnosis? I am just frustrated, because our whole lives were changed by this DX, or what we assumed the DX was, and now I am not sure why! I thought maybe some input from some of you would help me understand. Oh, and another question, I was told I needed a DPOA. I bought a program for my computer and made the form, took it to a notary, and he and I signed it. Do any of you know if I need something different? Like do I need to go to an attorney? Thanks, Linda
Linda- you should go to have it done by a qualified atty that does this. a form off the computer may or may not be one that is recognised by your state laws. many are different and the requirements change - some need witnesses some need notorized and some require other stipulations like being witnessed by unbiased non related persons. its not that much to make sure it gets done right. as time goes on they cant redo them so its important to get it done correctly.
as far as diagosis. moderate dementia can mean a variety of things. early onset AD or FTD or lewy body or lots of different varietys of dementias. means they may not be able to pinpoint it directly- some go thru extensive tests and get an iffy diagnosis at best. many of us have spouses that have some of various dementias all at once.they are all the same as far as outcome in the end. only meds may need to be changed accordingly to a specific variety. at least thats how i see it. others will have more input -divvi ps you also need to have the atty draw up a power of atty for healthcare and living will if your DH has specific requests. you may want to see an eldercare atty -divvi
Linda, did you get a prescription for any medication? Your story does sound very confusing, but dementia of any kind is really all the same story. How are you getting along on a day to day basis? As you read more of the threads on this website you'll gradually gather a lot of information that will make things clearer to you. Read, read, read! Hugs to you, Jeanette
Linda, what are they baseing his dx on? Has he had a neuro-psych exam, MRI, PET or CT Scan? How old is he? How long has this been going on? Not trying to be nosy, just helpful. I know how frustrating it can be. Divvi is right as usual, the end result is all the same, it's just the length of time and the onset of certain symptoms that differs. It all stinks.
((Linda)) Dementia is a diganosis. Lynn wasn't diagnosed with AD right away either. In the beginning I was told he had dementia. Only when he was in late stage 5 did they diagnose him with AD. I think that is normal, the diagnose changes as the symptoms become worse, more testing is done, and this gives the doctor a clearer understanding of what dementia they are dealing with.
I agree with Divvi, much better to have your papers drawn up by a lawyer. Very good point too about getting them done correctly now. Best of luck ((hugs))
I hope this helps clear up your confusion. This is how "dementia" is explained by our neurologist and social worker. "Dementia" is a SYMPTOM of an underlying problem. Dementia SYMPTOMS include personality change, memory loss, difficulty learning a new job, difficulty doing an old job, aggression, etc. etc. etc. There are a whole host of symptoms. Think of it like a fever, coughing, and tiredness. These are SYMPTOMS. The idea is to find out what is CAUSING the symptoms. With a fever, the doctor may order a chest x-ray, swab for strep throat; etc. etc. Then, based upon his examination and test results, he makes his diagnosis - it could be pneumonia, bronchitis, flu, or something else.
The same is true of the Dementia symptoms. The doctor does a series of mental tests, sends the patient to a neuropsychologist for extensive mental tests, orders a brain MRI, CT scan, EEG, blood tests. These tests COULD show that the dementia symptoms are caused by a vitamin B 12 deficiency, strokes, Parkinson's, and a large variety of other problems. If the tests show none of these things, a diagnosis of Alzheimer's Disease is made. 70-80% of all dementia symptoms are caused by Alzheimer's Disease. When it is very early on in the disease, before the symptoms interfere with job performance, they diagnose it as MCI - mild cognitive impairment, which usually leads into the next step - Alzheimer's Disease.
In your husband's case, they diagnosed MCI first, but inferred that it would advance to EOAD (Early Onset Alzheimer's Disease). EOAD is Alzhiemer's Disease in a patient under the age of 65.
It sounds as if your husband followed the normal pattern of MCI to EOAD, and he will continue to progress along the Alzheimer's path.
Please go to my home page - www.thealzheimerspouse.com, and look on the left side of the website. There are 3 sections on EOAD. I highly recommend reading Early Onset Dementia - A Pratical Guide. It is an excellent resource. Also, "Understanding the Dementia Experience" is on that left side. Another great resource.
Glad you found Joan's site, and know you'll find lotsa very good info here. Dementia: an umbrella that covers many different kinds as has been stated. My hb has vascular dementia. The path and end is the same as Alz, but the cause is high blood pressure, mini-strokes, TIAs (transient ischemic attacks)--all relating to the vascular system in his brain. He had a major stroke when he was 48. You do need to see an eldercare attorney--even if you're not old. They are experts in the legal papers you need now while your husband is aware and can help put them together. You'll find into on this web site, but an attorney will put it all together correctly.
Okay, thanks to you all. I will see an attorney right away. As to the other questions, originally they did an MRI, CT, blood, and a bunch of other tests with about 4 different specialized doctors. He is going to be 60 this month, his father did have Alzheimer's, but not diagnosed till he was in his 70's. They said there was a possibility of a slight stroke, but scans weren't conclusive. But they are prescribing meds for Alzheimer's, which concerned me if he doesn't really have that. I'm understanding, reading your reply's, that some of you may have gone through the same things and this sort of the way it goes. I would not think anyone was nosy at all, the more info you have the more you understand the question. I'm not a real private person, I get much relief from talking, thank goodness for this site. Thanks again to you all!
Mimi, if there is any chance you are going to need to go on Medicaid if you have to put him in a nursing home - you should see an ELDERCARE LAWYER. That person can also do the POA and DPOA etc. But you really should learn what your options are. Just give him the meds and if they don't work you change them, the whole game is constantly changing. I agree with the others, that dementia is dementia but what kind it is doesn't matter much except for what med he takes (and you can sometimes diagnose what kind based on the reaction to the med), at least you've got the SSDI!
Dementia is also a "condition" and a diagnosis in and of itself, such as cancer, or heart disease. There may be specifics (AD, Lewy, FTD, etc.) but until death and autopsy they are guesses at best.
Mimi - my husband was diagnosed in November 2008 with probably EOAD based on family history, then down to aMCI January of this year. In July, after neuropsych testing and MMSE with his neurologist they changed it to 'dementia of the Alzheimer type'. As said above, Ad can not be diagnosed for certain until death. I understand your reluctance on the AD drugs - why take it if no positive diagnosis. My husband was put on galantamine when diagnosed probably EOAD. I still not sure the drug is doing anything - he has showed more improvement with the CPAP. Just do what you can do.
Also, don't get hung up on stages. I do like where one person said their doctor just uses mild, moderate, and severe.
My husband was diagnosed (first with MCI, then 3 months later upgraded to EOAD) based on MRI, MRA, EEG, blood tests and family history. His sisters insisted that we go to Vanderbilt University in Nashville for a second opinion (we live in a small town in northwest TN). My husband said he was not interested in driving two hours each way for an opinion of a doctor is a larger city. It is what it is and like others have said, it really doesn't matter what type. One day at a time.
mimiS, Absolutely go to an Attorney for the legal DPOA, do not rely on the form you have used. Later as you need to use the DPOA you should not have a problem where it would be questioned as to whether your husband was capable of signing. An Attorney will make that decision before allowing your husband to sign. All States are different but be sure that the one you have drawn up allows for gifting and I mean gifting even to you, if you ever have to apply for Medicaid you will need that to be in the DPOA papers.
Now for your main question, what is dementia go to this web site and I hope it will help you with the questions you need to ask your Doctor. http://www.medicalnewstoday.com/articles/142214.php
Weejun, I have been told that Dementia is the symptom of a Disease with a name, ie, AD, FTD, LewyBody, etc. Today I spoke with our Neurologist's team member, another doctor, and in chatting with her, she said there are now two more DNA type tests that can diagnose one of the diseases. I asked if FTD was Alzheimer's..I never can get that straight. She said NO, that it was another type of dementia. Whatever it is, it, and all the other types of dementia, are horrible, unforgiving and ugly. I hate them all.
Exactly, Nancy. That's why I believe "dementia" must stand alone as a condition -- not just a symptom. They will "guess" it's AD, then change their minds and say it's FTD, or Lewy, whatever. They are just guessing -- it's still dementia. With cancer, they know it is in such-and-such organ, they don't say, oops, we thought it was breast cancer, but it was actually bone cancer. Dementia itself has symptoms: behavior changes, memory loss, confusion, etc....
thanks again, that really helps. Jane, I appreciate that info, I am going to see a lawyer, and know nothing about gifting...he will be eligable for medicaid/or medicare, not even sure about that in February, so I need to get on the stick....thanks again, Linda
Linda. ELDERCARE LAWYER. ELDERCARE LAWYER> Just say that over and over. One doesn't expect a cancer surgeon to be able to help you with one's arthritis, one shouldn't expect a divorce or estate lawyer to know the intricacies of having to apply eventually for medicaid. Consider that nursing homes cost on the order of $75,000/year most of us will have to face medicaid at some point. There are perfectly legal ways to protect YOURself if you talk to the right people. I'm not talking about walking on the edge of the law.
I have a question regarding gifting and the Medicare lookback. If I understand it correctly, they look at funds disbursed in the past five years. How do they consider a gift of cash given to a grandson when he got married to pay off his credit card bills?
Lori, boy do I need to do some research, have no idea what that is all about. Is there a place I can read/find out about that stuff? Just wondering. Hope you get an answer. Linda
I believe they DO consider it but it may be one of those things you can talk them out of. There is a website called elderlawanswers (http://elderlawanswers.com/) which answers a lot of questions, refers people to eldercare lawyers in their own state, etc. Very helpful. That woman that cs was posting about yesterday who was so pitiful has everything all wrong. PLEASE go check out that site, - and there was another one that someone posted just a day or so ago. Check them out but then MAKE AN APPOINTMENT WITH AN ELDERCARE LAWYER if you don't have long term care or veterans care available to you. Not many of us, particularly those of us with older spouses, can afford to go through $75,000-80,000 a year for several years caring for our spouse. And it is NOT a question of breaking or even bending the law. It is only a question of knowing what the law IN YOUR OWN STATE is. Don't take anyone else's advice about this.
I believe it also depends where you are. In other words, states with a lower cost of living might cost less for nursing home care than , say, New York or California. here is Westchester, NY, NH costs run around 75 to 80 grand per year.