I would like to know the source of the numbering system some of people on here are using. I am familiar with 4 stages but I see here mention of at least 6
What should I do now? I need advice. In February I began to notice my husband was having memory problems – repeating questions, forgetting information and conversations, forgetting to do simple tasks (flushing toilet, closing wardrobe, turning off water), struggling for words. I insisted he see the doctor, and he finally went even though he was adamant nothing was wrong. The doctor did the memory test and a cat scan (no problems spotted on that). He reported passing the memory test with flying colors, yet when I asked what was on it, it was clear he had not! A few examples: he answered “Madeline Albright” for Secretary of State – not even close – there have been 3 since her (my husband has always been a political junkie and would have known the correct answer a year ago). When counting backwards he started missing at 3rd number and the doctor stopped him and said, “Do you want to try that one again?” – then let him begin over. Why would a doctor do this? Anyway, so here we are in October, and in the interim I can add the following symptoms: quirky / odd / inappropriate behavior, confusion, personality issues (meanness, shouting, and temper), inability to cope, forgetting regular/favorite appointments (weekly bowling, monthly homeowners meeting that he chairs), decreased math / analytic skills, social withdrawal. Doctor says next step: neurologist. My husband is merrily floating down the river of denial and refuses to accept, discuss, or address the problems. Doesn’t this sound like AD? How long do I wait before I put my foot down again and insist he go in? If he goes to a neurologist are there MRIs that can provide objective evidence of AD? Because he is in denial, I feel I cannot take the chance of taking him to a neurologist and not coming away with answers – I won’t get a third shot. I know that he will study for the memory test and probably WILL pass with flying colors this time. It sounds terrible, but I was hoping he would get to a point where even he could not deny the problems, but a friend tells me some AD patients never get to that point. My mental motto: “It is what it is.” I have zero doubt there is something wrong. My husband is equally confident there is nothing wrong. One last question: Could everyone reading this please tell me how long between your first noticing symptoms and your receiving a diagnosis? Maybe that would help me with timing…
Welcome mary 22033. you are indeed in the crossroads of where alot of us AD spouses have found themselves in the past or present. its never easy to get them to a qualified dementia neurologist when they insist there is nothing wrong with them. its a coverup of course as nobody wants to be told they have dementia issues and its a terminal disease. what you are seeing sounds deadon symptoms of a form of dementia as there are many branches and takes a specialist to find which one he may have. you can start by documenting his behaviours and before going to the appt contact the dr by email/fax and send your list and observations and concerns and how long its been going on. unfortunately we here find many neurologists arent in the 'know' much about AD and brush us off the first rounds. make SURE if you get him in its with a specialist dealing with dementias ie alzheimers. they will order all testing to confirm or where to proceed from there. there are others here with your same ordeal of non diagnosis and its been going on for some time. they will be here shortly to let you know how they are managing - best of luck, divvi
Welcome to my website. I am on the way out, so I will just give you a quick answer. Check back later tonight for more.
As Divvi said, it is VITAL that you get a proper diagnosis by a SPECIALIST IN MEMORY DISORDERS. Not all neurologists are versed in Alzheimer's Disease. Log onto my home page - www.thealzheimerspouse.com - and look on the left side. Scroll down until you come to the box labeled "Find a Memory Disorder Clinic" in your area. Click that on, and see if there is one within a reasonable distance from you. We drive 100 miles round trip for ours. If there isn't one, contact the largest major hospital near you and ask specifically for memory disorder specialists.
Before you go, document every behavior, every memory lapse, and try to make an apt. for YOURSELF to speak to the doctor, and tell him how your husband can pass the memory tests, and every other concern you have. That may be an indication that he has another dementia - maybe frontal lobe or, as in the case of my husband, the AD is affecting the parts of the brain that the mini-mental test does not target.
Mary22033, My husband has complete lack of insight into his own condition (not denial, he is just blissfully unaware of it and incapable of comprehending) and has even forgotten that he has diabetes or has ever suffered from back pain (I'll never forget that). I got him to the neurologist via a subterfuge and it took about six months to reach a diagnosis; later I understood that there was doubt whether it was AD or FTD. Since the meds usually work only for AD, they wanted to make sure. Ironically he was diagnosed AD but now, a year later, is being tested again because we think it is FTD. There are lots of threads on here about the process of diagnosis, about getting your LO to a neurologist, and about anosognosia (=lack of insight into one's condition). You can use the search function but if you need help finding the threads, just say the word!
Welcome to this wonderful site but sorry you have a need for it.
My husband has FTD and has no insight whatsoever into his disease. His greatest worry is what he's having for his next meal. He was diagnosed at 58 after my noticing problems for over a year and a half with it becoming more noticeable in the last 6 months before he was diagnosed. He did okay on the mmse and his CAT scan was normal. It wasn't until he had an MRI done that showed he had atrophy of his frontal lobes greater than what you would expect for his age when the diagnosis was FTD. He was then tested by a neuropsychologist and this showed many more areas where his cognitive ability was affected. I believe the test you get at the doctor's office doesn't really show much especially if they ask the same questions everytime because some people can memorize the test.
I agree with Deb....push for an MRI if you can. The result of that test showed the shrinkage of the hippocampus in my husband very early on. He was strictly EOAD and progressed almost like a textbook example until he died.
One more voice..echoing the same advice by others. The tests include MRI, a 3-4 hour session with a NeuroPsychologist, blood work..and then an appointment with a Neurologist who specializes in Alzheimer's and other Dementias. We had one doctor make the referral to the Neurologist that fit the above description, and later, I received a letter with forms to complete, (basic info plus about 6 pages of questions re: my observations and opinions. This also had a sheet outlining the scheduled appointment they had made on our behalf with the Neurologist, Dr. Nance, the Radiology appointments and the Lab Appointments. It took almost a month to get to all of these tests, and allow time for the results to reach the new Neurologist. She had then reviewed everything and had a report prepared for me on our FIRST appointment. Of course, she spent time with Foster (and separate time with me) on that first appointment,...wrote prescriptions, and our next appointment was scheduled for six months later.
The Point I am making is that a qualified diagnosis is not a one time "look-see" appointment with immediate diagnosis. The first time - there should be a series of tests preceeding the actual meeting. - It was a huge hassle at the time, but that was back 4-5 years ago, so it wasn't that much of a problem for us. Today, it would be impossible to subject my husband to all of those appointments and in depth examinations.
Good luck. God Bless. And, PLEASE KNOW that there is a condition that mimics Alzheimer's in many ways that can be treated and is curable. It's called Normal Pressure Hydrocephalus, or NPH. Don't waste precious together time ..just in case it is NPH.
Another push for a MRI or PET Scan. My husband started having memory problems 8 years ago when he was 50, however, was not diagnosed from his 2nd PET Scan until July of 2008 with FTD. It wasn't from not trying, over those years he had 5 MRI, numerous EEG, blood test, CT scan, Lumbar Puncture & @ PET Scan. I don't place much stock in the 3 word test the doctor performs in the office. My husband was one that memorized the 3 words, he passed the test every time, even though his memory was declining more each year. As others have commented, please try to find out what the problem is.
HI! I've been reading for a number of months, but just became a member today. My husband was originally diagnoesd with AZ, but recent, more thorough investigation has changed it to FTD. I've learned a bunch from all of you, and would like to pass one on for your consideration...besides taking him off Aricept based on my readings here and in research papers, our family doc suggested he be tested for sleep apnea. The result is that he sleeps every night with a CPAP, and between these two life changes, he is, at least, temporarily BACK! Sleep apnea might be worth looking into. More details will follow, but thanks for letting me read. It helps immensely!
Welcome to my website. Your comments were under "Message Board Guidelines", so I moved them here to the "Welcome" section where everyone will see them. I am sending you an e-mail, so you will know where to look.
Dear Growingwell, Welcome to this website, sorry that you need it, but glad you have found us. This is the right place to be, to read and to write. I have been thinking of looking into sleep apnea, but I'm pretty sure my dh would refuse to wear anything anyway, so there's not much use. You have apparently noticed a dramatic improvement?
Did you notice any effect of taking him off Aricept? My husband has been on Exelon for a year now, but the diagnosis is now tending towards FTD. Not certain yet.
Thank you all for your responses. I am fortunate to live not too far from Georgetown University which has “The Memory Disorders Program.” When I take the next step – a neurologist appointment - I will go there. My big question is WHEN? I don’t want to subject him to a lot of testing only to walk away without a diagnosis. It seems like most people do not get a diagnosis until 2 to 3 years after they notice symptoms. Is that right?
My fear is that my husband has AD, but that he may not be far enough along for a clinician to notice. After his visit to the family physician, and subsequent tests (blood work and CAT scan), he responded, “I already did all your damn tests – there’s nothing wrong with me!” That should give you an idea how receptive he is to trying to get an answer. For a while I thought, “Okay. I am just going to point out every time he has a memory problem, until he gets it.” That definitely did not work – it just made him paranoid, angry, and no closer to admitting he has a problem. I have stopped that.
I have documented most of my husband’s issues – although I admit there are some gaps in my log – because it simply became too depressing to record everything. Now I just keep track of the big issues or new issues.
Someone mentioned NPH. I am assuming that would have shown on a CAT scan. Also my husband does not have the other symptoms associated with that.
Joan, I want to thank you so much for this website! I can’t tell you how much it has helped me! How wonderful of you to reach out to others while carrying your own burdens as well. One of the shocking things in my experience is that my family is so uncomfortable about the topic, that I am certain they would prefer I didn’t discuss it with them at all. That was especially hurtful coming from my own mother – who has always been my rock. But I think I understand - because she is 88 years old herself, and is experiencing normal age-related memory loss for a woman her age, she is very sympathetic to my husband. What she doesn’t appreciate is that my husband is only 58 – the two of them should not be having “shared experiences.” So your website has been something I really needed – thank you, thank you, thank you!
The last time I asked a leader in Alzheimer's Research what was the most significant advance she thought had been made in the Alzheimer World. Her reply was "early diagnosis". She said, "We are able to accurately diagnose victims of this disease earlier than ever before with the advances made the past two or three years". I asked the age of the youngest patient they were working with at the Baylor College of Medicine, and she said "39".
The drugs that are availavle SLOW the PROGRESSION of the disease. I'd rather slow the progression at a very early stage..say 3 or 4... than slow it in Stage 5 or 6, wouldn't you?
Please...Don't second guess the diagnosticians. If you go to a top diagnostic facility, they will be able to say if he does or doesn't have Alzheimer's. I'd pray that he does not have it.
As I stated above my husband just turned 60 and was diagnosed last year at the age of 58 with FTD. Sometimes it doesn't take that long to get a diagnosis. It took us about 8 months. He had all the blood tests (normal) and a CT scan (normal). It wasn't until my husband had a MRI and neuropsychological testing that he was diagnosed. A CT scan doesn't seem to be enough of a test to see the changes that have happened. You should try to get him at least an MRI.
Mary, I had a similar disappointment with my mother, who is also 88 and suffering some minor (well, to her it's major) memory loss. Her PCP prescribed Namenda. For a long time I didn't tell her about DH, fearful that she would be terribly upset for me. Finally about a year ago when we were visiting her and DH was having trouble navigating to places he had been many times before, I finally told her. She had not noticed anything (!) and hardly believed me at first. I had hoped that we would be able to talk about it but for a long time she seemed to be avoiding the subject. A couple weeks ago we were staying with her again, DH had progressed a little farther into the disease and finally she was able to see the problem realistically and did start asking some questions about him and about the treatment, and I told her about this website.
But I still tend to avoid the subject with her. I confess I was disappointed that she hardly seems upset for me, but lately I've realized that she's living in a world where her friends and family are dying all around her, it must be an entirely different perspective. We spent every evening in our week together looking through old photographs, reading old letters and the school paper that we both had written for, me 20 years after her. It was a wonderful week.
I've had to give up her being my rock in every way. Part of growing up I guess (at 67 it's about time). She needs some rocks herself now.
The first thing that comes to mind about your mother's reaction to your and DHs situation is that perhaps her own "minor memory loss" is something more. From my experience both as a child and as a parent, it matters not what a mother herself may be going through, the issues with a child become paramount in the mother's life. On the other side, a lot of dementia initially shows up as a lack of empathy for others' situations. Just my thoughts.
Weejun took the words out of my mouth when I read yur earlier post about your mother not empathasizing with you over your husband's situation. Inability to demonstrate emotions, not being able to demostrate her care about some one else's problems is a definite dementia trait. I am so sorry...I didn't realize your mother was unwell. Does she live alone?
Thanks for your concern, Weejun and Nancy. Yes she lives alone but she's not unwell. My brother lives 45 minutes away, calls her every morning and helps one day a week with shopping, business and anything that needs doing. She has a younger sister who lives nearby and looks in often and THREE sisters-in-law in the same village who do things together and are on the phone every day. She is very active, gets out every day in the car and walking, goes to senior meals and on bus trips, etc and visits her elderly friends in a rest home a couple times a week. Cooks up a storm when anyone comes to visit.
I really do not think she has dementia. She had a breast operation in the spring of 2007 and complains of problems with her memory since then. She is very much aware of these lapses and they get her down. She's been better lately. Perhaps I exaggerated the state of her forgetfulness and lack of empathy in my post. She just is not a demonstrative type. I take after her in this. I remember, many years ago, at the funeral of my grandfather (her father-in-law) looking around as we left the pews and seeing not a dry eye in the place -- except for my mother and me.
I guess I was lucky,after a couple years of declining memory,my husband begged his doctor to do something,the dr. said there was nothing wrong ,just stress. we changed doctors, the new one ordered a MRI immediatly,it showed AZ just starting,went on ARICEPT and cymbalta,terrible moods.that dr.retired and new one put him on Zoloft and namenda,stopped cymbalta.what a change.he has not gotten any worse since the change.thank goodness he is cooperative with treatnent or tests.I think finding out what was wrong relieved the frustation.after reading other comments I feel fortunate.This site has helped cope so much.THANKS
I'm new to this site, and I can't tell you how relieved I am to have found it. My husband was diagnosed with Lewy body dementia a year ago and yesterday we went to see his neurologists (saw them six months ago) and they now say his diagnosis is frontotemporal dementia. He has become very easily agitated and has started screaming at me. He was very angry with the two neurologists who saw him and was very aggressive and confrontational. They have now diagnosed him with the FTD and telling me to give him Seroquel. Everything I have read on the Internet about Seroquel is that it should NOT be given to someone with FTD or Lewy body. I'm so afraid to give it to him, but I think I will have to soon. Please tell me about your experience with it. I am terrified of this diagnosis. Lewy body was bad enough but FTD?? Please tell me about your experience with this drug.
Welcome to my website. You have come to a place of comfort for spouses who are trying to cope with the Alzheimer's/dementia of their husband/wife. The issues we face in dealing with a spouse with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". There are 4 sections for EOAD members - two of which focus on the young teens whose parents have EOAD (early onset AD). There is a great new section on informative videos, and another excellent resource - Early Onset Dementia - A Practical Guide.
Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. Log onto the home page daily for new blogs; news updates; important information.
There are many members here whose spouses have FTD and its variants. Go to the top of this page, click "search", and put in "FTD", making sure the "topic" circle is filled in. You will find at least a dozen FTD topics. I do know from friends' experience that FTD rages can be horrifying, so it is essential to get him on the correct anti-rage drug. If Seroquel doesn't work, the doctor can prescribe other medications until you find the right one. I do know of someone who has FTD and calmed down after the Exelon patch was removed. Remember - every dementia patient is different, so what bothers one, or works for one, will not necessarily work for another.
Welcome to the site. My husband has the behavioral variant of FTD and his takes seroquel twice a day but I can give him up to two extra pills a day if needed. He was first given risperadal which had the opposite effect on him. I know of quite a few FTD patients who are on seroquel or risperadal without any adverse problems. The seroquel has calmed a lot of his obsessive behaviors to manageable levels and calms him to. Sometimes its a trial and error before you find meds that help. SSRI antidepressants such as celexa have also been shown to help FTD patients. My husband takes cymbalta.Is your husband on any other meds?
I have such mixed feelings about these boards. On the one hand, it is helpful to have a place to go when you're feeling down and don't know where to turn. On the other hand, reading all these stories kind of depresses me as well. My husband was given the diagnosis of FTD yesterday and it's scaring me to death. Lewy body dementia with parkinson overlap was the diagnosis we received a year ago. But, in just the last few weeks he has become aggressive, stays up almost all night, and is doing such crazing things, such as washing things we don't usually wash, such as keys, etc. He is so close to anger that it's difficult for me to even know what to say to him without making him angry. The neurologist told me to act as though he is a toddler. She said, "You wouldn't get angry at a toddler, would you (and I don't)? Just let things go over your head and realize he doesn't mean what he is doing and saying." But, this is so difficult for me to do. I'm trying. I'm really trying.... The doctor told me I was a saint.
Meemabev, Welcome to the site. You have come to the best place. I know what you mean by being depressed by all you hear here, but in the long run it's better to be prepared. I'll bring up a couple helpful threads for you, about things that some of us have found most helpful in dealing with our spouses. It's terrible to have to live with such anger. I'm suprised that the doctor didn't prescribe any medication to calm your husband. Tip: Write down some of the worst things that he does and says in some detail and mail or send them to her, and tell her that many of the spouses on here have experienced wonderful changes due to medications like Seroquel and Risperdal. Your appeal will certainly be effective if he threatens violence or uses violent language. SH'e right that you have to learn to let it go over your head, I have achieved that pretty much, but have much less of it to deal with since my dh (dear husband) is on Risperdal.
I have just joined this group - husband (73) diagnosed with AD 3 years ago and Parkinson's two years ago. Doing fairly well on aricept and namenda. Have moved into a retirement village in late April and going through changing drs again. Was lucky to have been in support group at Leeza's Place in Melbourne, FL, which was great. Really miss the support they offer.
Janedow, it is good that you have found us. You've come to the right place for information, support and communication. Feel free to tell us more about yourself whenever you're ready.
You've probably already discovered how the site works and have seen the immense amount of material here. Most of us have found it to be an immense source of support and comfort -- different from a face-to-face support group, but available 24/7. I like the combination, although the support group in my village doesn't amount to much. Perhaps you'll be able to find something in your new community eventually?
Thanks so much for your kind welcome. It's so good to know I've found a place not only to vent my feelings but to get some sound information. Joang, I will be sure to check the other parts of this site you told me to visit. And, Deb, in answer to your question about other meds my husband is taking, he is taking quite a few, some for heart disease. He has been on Zoloft, but because of some issues with not getting to the bathroom on time and soiling himself, the PCP decided to take him of that, thinking that might be the cause. Fortunately, he seems much better in that respect. It was such a problem, both for him and for me. He has also been on Aricept and Namenda and his neurologists decided to stop the Aricept and put him on Seroquel. I think I will taper the Aricept and when he is no longer on that, maybe he'll be less agitated and I won't have to use the Seroquel. As an aside, could someone please let me know what ttt means?
Welcome, Babozek. You have come to the right place and you will make many friends here.
Threads (topics) are brought to the top of the list when someone posts. In order to bring an older topic up for newbies (or anyone) members sometimes just enter "ttt" for "to the top" to get the thread on the first page.
Welcome, ljblue! Many others will be along shortly. This is a very active board. Meanwhile, read the posts and read the articles on the home page. Now THAT should keep you busy for awhile!
Welcome, and I'm glad you found this website, too. It's been most helpful for me. Reading posts here has made me aware of what I might expect, that no 2 dementia inflicted folk are exactly alike, and that others are going through similar situations. My hb has vascular dementia.
Another welcome. My husband was also diagnosed in 2008 with probable alzheimer's. This is really the place to get answers to all your questions and to learn and prepare for what comes next.
ljblue, you have come to the right place. This is the most wonderful source of information and support. Explore to find discussions on the topics that you need right now. Feel free to ask if you can't find the information you want! AND tell us more about yourself whenever you feel ready.
My dh (dear husband) is 66 and has Alzheimers, maybe FTD or a combination. About stage 5. We live in the Netherlands.
Welcome, ljblue! I'm not much more than a newbie myself, having come to this site about 5-6 weeks ago. Joan has done an absolutely fabulous job of striking familiar chords through her blogs (read some of her past postings on the main page of this website ... and people such as you and me keep posting comments that are quite helpgul to us all in many ways. Whereas each person with AD is different, there are many commonalities for caretakers/spouses. In my situation, my wife just recently turned 63 and was diagnosed with EOAD about 6 months ago. However, I saw many AD symptoms start to develop 2-3 years ago. I've posted several comments on an EOAD message board.
Accvann, I like swebite just fine. Hmm, somthing Freudian there?
PS: if you want to make a correction after posting you can hit the little word Edit just above your post. It will come back in the box and you can make any changes you like!
Hello to all. I am new posting here but think I have read nearly all (seems like it). This seem to be the place for answers or suggestions or for encouragement. My DH was just recently (Nov) diagnosed with AD and in the early stage. Just starting this journey and know I will appreciate friends in the same boat to share the ups and downs. Also signed up on facebook. My DH is 70 and I am 66, hard to believe, we feel so young. Live in northern NY. Presently in Phoenix AZ soaking up the sun. Hope to make some new friends here.
Welcome, earthangel. I'm also in KY on Lake Cumberland. My husband was DX'd in 2003. He is 86 and I am 70. You will find so much support here, so feel free to joint right in to ask questions, vent, rant and rage - whatever you need!
Welcome to my website. You have come to a place of comfort for spouses who are trying to cope with the Alzheimer's/dementia of their husband/wife. The issues we face in dealing with a spouse with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a new "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
Thanks friends in common, I already feel the support. Vickie, I'm in NY but can see why you thought it was KY. We live on the ST. Lawrence River in the middle of the "Thousand Islands" I can't offer anything at this point but feel in my bones that a breakthrough will come soon.