After taking sometime to read really old posts I ran across several caregivers who mentioned that their LO had not been diagnosed, yet they are pretty sure what the diagnosis would be. I am just wondering how you guys do it, without a diagnosis? Honestly I didn't like getting the diagnosis but living with out it would have made me more crazy. Seems like you need it for so many things such as Jury Duty, Drivers Iic, Disability (if app), meds, etc. Plus its a wonderful excuse to get out of a dreaded function (DH isn't feeling well today!) also thinking about the future when they wander or get into anger issues, if there is no diagnosis then they could end up not being searched for ( hey their adults if they want to take off they can) or if they would have an anger issue with the cops or someone they could end up in jail. I don't know the ages of the LO involved, and suppose that older LO's wouldn't maybe have some of the same issues as younger ones but still think some things would apply. So I guess my question would be, why haven't you seeked at answer? I am sure denial is part of it on their part but wondered if there is other reasons for not seeking an answer? Thanks, not trying to me nosy but was just wondering. Rk
The mini-mental is on line. If you take a look at it you find that it is pretty easy to figure out what is going on. Some doctors out there fight the caregiver. Some LOs won't go to the doctor. Can't get a diagnosis unless you can get to the kind of doctor who works with dementia patients.
The few people currently online who have LOs without diagnoses either can't get the LO to go to a doctor, or are currently trying to get permission for them to see a neurologist.
Rk-- Some, I think, don't have a diagnosis because their LO won't cooperate. Sometimes because they're having trouble getting a Dr. to "see the problem" (some don't/ won't consider AD if the patient isn't "old"). There may be some in denial.
Then there are some like me, who are dealing with other problems with their LO and the Dx comes out of the blue. He already had significant Learning Disabilities and then added Schizo-Affective Disorder (mental illness). With all the thinking/processing issues from those, I had no clue of anything else. A crisis with a psych med. meant a stint in the Psych Ward for a change of meds. Before making the change, testing was done and I was asked for his "STROKE HISTORY". I responded, "What Stroke History?' He has Vascular Dementia.
I do agree that getting a Dx is very important because not all dementias are the same. Different ones require different treatments. Some may only be dementia symptoms because of something else. There are too many variables to handle our LOs cases without knowing what is really going on.
Besides that, I believe it's a lot harder to deal with a mystery condition than a known one. Even one as hard as AD. When you know, you can learn ways to deal with anything. When you know nothing you are fighting ghosts, mist shadows. There is nothing to tell you what will work; what won't; how well you're doing.
Also, as you indicated, a Dx is vital when trying to access services.
Thanks Starling for your answer. I just think it would be even harder to deal with, without a true diagnosis. So many issues to deal with. Thanks again. Rk
I have known families in the past who would not take their LO to a doc, it wasn't only denial, but I think it is not understanding what dementia/AD really is and the all-important shame. A dx is important for all the things mentioned above, but it is also very important because dementia may well be caused by something other than AD, something that could be reversed or certainly treated differently. So w/out a dx, how would one know?
Our neuro says "dementia." Says that will take care of anything that requires a diagnosis. He did do all the tests, we had the spinal tap, the various clanging and banging ones, but he was highly educated (phd, professor), highly verbal, and apparently those are the ones that are the hardest to figure out exactly what's going on unless you follow them for years. If you look at the stages, and look at the way people describe their spouses here: he's mostly a five with some six behaviors.. or .. I think he may be heading into stage 7 .. you can see that the variations are wide. The man who can remember, and for the most part, tell, with concentration although with some loss of words, an anecdote about something that happened fifty years ago, is the same man who is incontinent, doesn't remember to brush his teeth, stands in the tub without washing until all the hot water is gone, who has no concept of time.
It becomes a process of elimination for the neuro who has to base his diagnosis at least partly on behavior. It's not like you can do a biopsy, or a blood test or an x-ray. He can make some educated guesses, but really that's what it is, and many of us here have spouses originally diagnosed with AZ who then decide for themselves that maybe it's FTD, or LBD, or whatever, because they're observing 24/7 and the neuro's not.
Hi Briegull!... When my DH was diagnosed, it was as a result of one 6 hour neurological testing procedure with a clinical psychologist, extensive blood tests that would include the APOE3 -APOE4 gene study, MRI/CT Scans to search for evidence of brain degeneration or previous strokes, X-rays and then an additional clinical evaluation by Dr. Doody , his neurologist at Baylor.
She was able to define Alzheimer's as the cause of his dementia..which is a broad spectrum word describing many causes of the obvious mental changes. Some causes of dementia can be treated, or reversed. Normal pressure hydrocephalus is one example. If it is NPH, (which is indicated by incontinence in the earliest stage) a shunt can be inserted that drains the fluids into the stomach and they return to their old selves. If that's not a reason for a person to want a true diagnosis, I don't know what would be. Their behavior is EXACTLY like AD - but is is NOT AD! What a relief that would be to know! PLEASE, don't just guess.... get tested for NHP and make sure it is not just that..which is fixable! (Google Normal Pressure Hydrocephalus for more information). IF ONLY.....that had been our diagnosis. (sigh) If only......
briegull, kinda in the same boat here, Dh besides being young was highly intelligent and because he has known his Doctor since childhood and could buffalo him with their glory days, I had to push to get some answers. But I wasn't gonna stop till somebody had an idea what was going on. And to some extent Dh wanted someone to figure out some of the issues as well. Though there was a whole lotta denial going on. On the mini mental there is a area where they have to draw this shape. Dh couldn't draw it, but he told the doctor what the shape was called. I on the other hand could never have told him what it was called cause the shape was some mathematical symbol. I just don't understand why not get some answers at the very least for the reasons I stated in my opening post. As well as the reasons Nancy posted about.
Nancy, that's exactly why I asked, Why not. I would so much rather know the dreaded outcome of AD then to find out only after the fact that it was actually something that could be fixed. I guess I am just a factual person. If it isn't AD and the LO hasn't been diagnosed why put yourself into that category? Plus the worry that if and when a LO wanders off, would the police even look for them without someone stating they have AD or are they going to say, Hey they are an adult? That would scare me the most. We have had several here that have taken off and haven't been found. And that's with people looking for them. I don't know, I guess I just think I needed to know for sure. Rk
Nancy, Your point about a proper DX is very well taken. I just met someone recently whose mother has NPH. It was misdiagnosed as AD for 12 years! Her mother recently received a shunt and, while her mother is sometimes like her old self, she has permanent brain damage and muscle atrophy from the untreated NPH.
My first comments were 'lost' but again, It helps to have a NAME for this beast.. to have some frame of reference for adapting our own thinking about whats going on. For 5 years we struggled to find out. Even so, 4 years later, I'm wondering well.. could it be FTD? He's not forgetting his family's names.. He's still functioning fairly well in familiar places.. He still knows far more than I would expect after now, NINE years. However, on the scale of abilities. He is a solid 5 and nudging into 6. He has more verbal difficulties, visual irregularities, thankfully, no incontinence yet. He is taking medications that I suspect would be the same if it was FTD or Alz . Aricept..mainly..with Effexor (which is a blessing). Anyway, the diagnosis as awful as it was to hear..was at least something to grab onto and begin cope in a more practical way.. I think..(on good days..hee hee)..
NancyB--I live in Maryland but have heard of Dr. Doody--you are fortunate to have her as your husband's doctor. According to someone in the field whom I respect, she is one of the foremost doctors in the Alz community at this time. Can't hurt!
Pentagon, or hexagon. That's the picture in the mini-mental. My husband did the same, naming it but unable to draw it. He had the test for the BPH; the doctor was very hopeful that that was the problem, drained fluid once (the spinal tap I referred to above) but didn't do the whole shunt because there was no improvement. Later MRIs etc show no abnormal fluid accumulation.
My question is: if the doctor says to you, it's dementia and here are some meds to try, and you keep trying meds to keep the person on an even keel, and more or less get there, how would you behave differently toward him if it were Alzheimers' vs. FTD? They're all "terminal" diseases, some sooner than others, and sometimes the rapid deterioration seems to make the doctors change their diagnosis.. but they're still your spouse, you learn on this site that whatEVER he's done, or she's done, someone else has experienced the same thing.. even if the diagnosis is different from what your spouse has. Putting a NAME on it doesn't change the behavior. I certainly agree that one should pursue things like the BPH, have the MRIs, etc. But if the doctor can't come up with a definitive diagnosis, I wouldn't necessarily go doctor shopping until I got one.
Lizbeth, How awful to have been missed diagnosed for so long, and now have permanent damage. Not to say that what her issues were, wouldn't have turned into something else. But wow what if? Thanks for making my ?/point more important.
Judy, I agree that adapting/coping to a diagnosis is easier than the guessing or the unknown.
briegull, Pentagon or Hexagon? I sooooooooo flunked math I have know earthly idea what it's called....................... Sad I know! But that's why I didn't pursue a career in mathematics! I agree that putting a name on it doesn't change it. It's just my thought is that guessing your LO has it would only create bigger issues such as the reasons I and others have stated, and wondered if not having a diagnosis created a bigger hardship on the caregiver? And agree that having a diagnosis doesn't change the fact that it's a terminal disease. I guess what I wonder most about those who haven't got the diagnosis yet assume that it is, is what if it's not? And all along it could have been an easy fix? I don't know I suppose its inquiring minds want to know. Rk
MarilyninMD..how neat is that name. DH's daughter lives in Gaithersburg.
I cannot say enough about Dr. Rachelle Doody and her extensive team of Alzheimer specialists. They're like puppies following her around. Fellows (MD's) from around the world studying under her. Her approach is extremely scientific, no warm fuzzies. For that, we have Dr. Mary Kenan, Psychologist, (who was one of the authors of Alzheimer's for Dummies.) plus many other publications. You can google any of them for further information. Dr. Kenan is warm, amusing, and sensitive to the caregiver. In fact, she ministers strictly to the Caregiver, and sessions with her (and the caregiver) are billed in the package with Doody's work - on his side of the chart.
She's a phone call away 24/7 and so helpful. We see them twice a year after the initial meetings..and I'd imagine most anyone could manage coming to Houston twice a year if they didn't live toooo far away. Our Lisa flew here recently on Continental out of Reagan in Baltimore..and it was about $325/RT.
Fact to understand is that Alzheimer's cannot be cured, but she's a Research Specialist, sat on Panels at last Summer's International Conference on Alzheimer's in Chicago, and has spoken on the subject all over the world. If our case study can add vital data to her research project, then it's worth the fight to get him there each time, even when he put green toothpaste on his face instead of shaving cream (as we dressed for the last trip), and everything else that goes with taking a 160 lb. 4 year old to the doctor.
Do they actuallyask you to draw a hexagon!!???. Good God Almighty! I'd flunk right then and there. What the hex is a hexigon? No wonder there are so many AD diagnoses now! (IF the diagnosis is based on the hexagon knowledge theory- I'd be right up there with DH!)
Don't panic, Nancy. They show the patient a drawing of two interlinking pentagons, and ask the patient to draw what s/he sees. Just remember to look up the date before you take the test!
Good advice Miss Sunshyne. I wonder if they have the 'cheat books' to study in advance of the tests. What were the yellow and black booklets called that we all fell back on if we had not read the assigned novels in Literature classes? We'd need one of those...with answers to the questions. (Sick joke!) Sorry!
Honestly Nancy, you don't need a cheat book. The tests vary but these are some of the questions just off the top of my head.
What day of the week is it? What is the year? What is the month? What is the date? (I mess this one up myself pretty frequently, but they don't expect anyone to get 100 percent) What is the season?
What kind of building is this? (There are several different possible answers and all of them are right.) Draw a clock face or the interlocking pentacles with the picture in front of you. (Or in my husband's case there was a clock on the wall in that room).
Sometimes they ask for your address or your phone number. Sometimes they ask for the name of the current president, and the first president. In other countries the name of the prime minister and/or the sovereign.
They give you the names of three objects and ask you another question and then ask if you remember what the three objects were.
They will either ask you to count backwards from 100 by 7 (or another math variable) or to spell the word WORLD backwards. And yes, this dyslexic woman who can't add or subtract was able to work out the counting backwards. This one tests being able to work through a problem.
So you can see you ALREADY know the answers. <grin>
Hot Dog! I am sooooooooooooooo OK. I can tell time, tell the date, tell the name of the president.... remember 3 objects: if they are: (1) vodka (2) tonic and (3) Lime..... and I'm good with counting backwards by 7's if they don't want me to go all the way to "7".......and all of that.
Problem is, I can't tell DH a darned thing! Had to take a quick trip to get some construction repairs going on a rent house we own... Of course he went along, with our little dog. He proceeded to take the dog to the front yard, the dog went round and round sniffing the new grass...and there he stood with the leash wrapped around his legs. I broke the existing track record getting to him before he ended up on his head. I spent more time taking care of him than I did with the contractor. Jeez Louise!!!! Just another day in paradise.
When my husband saw the neurologist in January, she told us about a new patient (new to her). When given the test he was set to go until he figured out the questions were different than the previous doctor. He had had the test so many times he had memorized the answers (especially the 'remember these words, count backwards, date, etc.). He did poorly on the new test!
I want to jump right in and help my husband. When the doctor asked him questions, he would look and me and I would stare at the floor. It's hard to watch them struggle.
That is so true. I'd avoid eye contact with him..but I could still see him glaring at me with the wide eyed glare ...that means "SAY SOMETHING!" For years, I'd be the one to prompt him at social gatherings, whispering "Judy and Bob" are walking here,...or I'd Say, "Judy and Bob! you look fantastic!" and he'd say "Yes, Judy,!!!" Never having a clue who Judy was! We were a team and he'd glide in as smooth as glass. So, when I wouldn't give him HINTS...he'd give me that "LOOK".
He's a huge Clemson TIGER fan and alumni. One question asked was, A Lion and a Tiger were in a fight and the Lion ate the Tiger. Which one is dead?" ............ Well, his beloved Tiger's NEVER lose and he refused to say TIGER. Later he told me that it was a stupid question, and who were the Lions, anyway?
Thanks Sunshyne for clearing that up, like I said I could draw them all day long but didn't know what they were called.
NancyB I am with you on that Vodka/tonic/lime right about now. Sounds really good.
It's heartbreaking to watch them struggle thru the questions. And yes, my Dh was looking to me for help. I didn't help, wanted to but didn't, I only tried to clear up the questions that the Doctor asked that he didn't understand correctly. Like what county are we in. We were in the county that he grew up in, yet he kept saying another county and when I cleared up the question so he understood the county that the doctors office was in he said OH I thought he was asking about the county we live in........... ummmmmm he got that one wrong to.
If you look at other posts by me, I have been trying to get a concrete diagnosis for a long time. My DH is young (51). His decline has been mostly over the last 3 years, but I can recall some events going further back in time. I am dying for a diagnosis, but can't seem to get one .... yet.
On a related vein, I was told by my husband's doctor that it's perfectly acceptable to coach him before being tested to qualify for a clincial trials. The trials have MMSE cutoffs established by the drug cos. and if it's too low, they won't admit you. He recommended going over the questions with him while sitting in the waiting room--this technique apparently may work if someone's MMSE score is borderline. By the way, I found it fascinating the way my DH drew the pentagons--on the sample they were interlocking--but when he drew them, they were at opposite ends of the page. This was on the day he was diagnosed with MCI and again shortly thereafter. To see this literally showed me how the brain was malfunctioning, in areas other than memory, even at the earliest stage.
Nancy B-- That setup with the psychologist sounds great! I think it should be standard operating procedure everywhere when dealing with dementia. We need support/treatment as much as the patient! I saw a psychologist a few times after dx on my own, it had nothing to do with my husband's doctor. A referral from him would have made much more sense.
Pam, we lived in Seneca on the lake between '95 and 03. Huge IPTAY people, N.& G.Bennett are close friends. Wonder if we know each other? You will understand why he said "Tigers never die!" He was President of Class of 51.
I remember one of our neurologists telling me of a patient he was checking for dementia. When he asked her who the president was, she replied "we don't have one". He said he had to give her a correct answer on that one. To avoid being political I won't record who the president was.
last visit to neuro office was last wed and he told me that a patient was brought to him with signs of early Alz..he put him thru all the testing and turned out the guy had earwax out the kazoo in both ears and needs hearing aides. he was deaf and it mimicked AD. hows that for scary..divvi///
Divvi, I have a friend (?) who was unhappy in her marriage. She tried everything she could to get her husband diagnosed with AD, - just KNOWING that everything he did 'wrong' was because he had dementia. She visited with a number of doctors - even had the 6 hour psychological test ordered . She'd read articles on AD and then tell the docs that he had the same symptoms. He is 80, an avid yachtsman in Florida, and she was wanting to have him "put away" and still enjoy the life he afforded her. (They had been married only ten years). It didn't work. She finally ended up with specialists in Houston who told her to give it up, he was healthy! We felt so sorry for the poor guy! They are in the midst of a divorce right now. I wonder if she had gone to a primary care physician, and told HIM the same things, if he wouldn't have taken her at her word and started him on the drug regime. She was quite convincing. Unfortunately, she went to the best Neurologists initially. oops.
Nancy that is hysterical. Sounds like she got what she deserved in the end!
Getting a real dx is so very important. There are so many types of dementia and even though they all end up as AD in the end, the "meanwhile" is important. The meds that work for some dementias may not work for others others. Time frames for progression are different as is the prognosis. Everyone should do their best to get their LO properly diagnosed.
He doesn't know the day, the date, the year, the president (current or past), the names of our closest friends. The other morning I got up first and he rolled over and got out on my side of the bed. He didn't know where he was. He couldn't figure it out. I had to help him turn around and see the other wall. Even then he was confused. I'm thinking the meds aren't doing as well now as they were doing several months ago.
I knew in my heart it was AD 5 years before it was diagnosed. He just relied on me too much for it to be normal. It's really sad to witness.