My DH is only 61 and I know he has had this terrible condition for at least 3 years. Can anyone tell me if the stages are the same for EOAD as AD?? Also, does the condition seem to go through the stages faster, slower or about the same whether it is EOAD or AD? I have tried to find this information here and on other sites but can't seem to get much information on it. My major concern right now is that I am much much older then my DH and I wonder how long I will be able to care for him. He is in the moderate to severe phase now. This past weekend he couldn't pump the gas at the service station without have helping...this was something new and very upsetting to me.
Oh JudithKB, I also wondered the same things in the beginning of this disease with my husband. He was diagnosed at age 60 but people who worked with him had noticed it two or three years before. I did not realize it somehow, until they had to retire him. You asked is if faster with EOAD, I for one can tell you I don't think so. If you have seen one you have seen one, that is what they tell you and you absolutely cannot say how another one will do because mine did a certain way. I have not had to endure the wandering, the not sleeping, the constant questions. But I have had to see my husband slip away degree by degree, he lost all his speech by year 7 and now we are in year 8. He is healthy and will probably live a long time yet.
The heartache of all this is that the communication is gone so therefore the whole relationship suffers, it is heartbreaking and what can I say, there is no one who can tell you if you will be able to care for him till the end. He could go fast and could be like my husband and go through the end stages. I really feel my husband will have to endure the horrible end stages before something else takes him.
If it will help you to know, we have a friend who did not have the disease as anyone was aware and she only lasted 4 years, she was NOT early onset and she died from the disease process and nothing else. It progressed very fast with her.
This is one disease that they cannot perdict the outcome for you.
There are two types of Early Onset - The first generally strikes those under 65, and follows the same path as later onset Alzheimer's, which is to say - it's different for everyone. There just is no way to predict how fast they will progress through the stages. It is most likely that is the type your husband has. You can copy and paste this link for information on stages - http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp - but patients go back and forth between stages, have some symptoms of one stage, some symptoms of other stages. My husband has completely lost his short term memory for everything, except the area in which he has always been strong - driving directions. He can sit in the passenger seat and direct me to anywhere, even if he has only been there once, but he has no memory of a conversation we had this morning. It is extremely weird.
The other type of Early Onset is Familial Alzheimer's. It is very rare, and strikes those in their 30's and 40's. It is a genetic fault that runs in families. In these cases, the decline is usually very rapid, as in the case of Tony's wife - Go to the top of this page, click "search", and click the circle "comments", then write in the name Tony. All of the posts from Tony will come up - he and many others are struggling with EOAD. You can also click the circle "topic" and write in EOAD.
Copy and paste this link for a simple explanation of Early and Late Onset -http://www.guide4living.com/alzheimers/types.htm
You can also check out the topic on these boards - Is it Genetic?
Thanks for your comments. My DH has heart problems also. I pray that will take him before he has to suffer through all these horrible things that so many must go through. Fortunately, I am in good health and have no real major problem with him yet as far as dressing, eating,etc.and just general every day life. Sometimes he can't remember if he had breakfast an hour later and he doesn't know our address or telephone number. The last two weeks he got very upset and accused me of stealing $400 from his wallet and then the following week he accused me of stealing $250 from his wallet. I really don't know if he had that much money in his wallet. If he did ,he probably put it some place and can't remember where. I really don't think he lost it. He got very upset when I told him..."You CANNOT and WILL NOT go to the bank and get more money. I will get money for you when you need it. We can't afford to lose $650 in one month. When he can't find something he always thinks someone has stolen it from him.
JuditHKB, The lady I mentioned that only lasted 4 years with the disease was past 70 when she was diagnosed. So go figure, I don't think anyone really knows.
Hello everyone! I am SO GLAD to have found this website! It has been so very helpful. My husband is 50 and lost his job of 28 years a little over a year ago and just lost another job he got right after he lost his long-time one and that is when I noticed something isn't right. We now have no insurance and he is unemployed (I'm not making much at all either) and we are heading down the road of losing everything to get a diagnosis/help. He is in major denial. Helpful to read the articles on EOAD and how hard it is to get a diagnosis, although I think I should hold off until we get some insurance, huh? What do you suggest?
God Bless this site and all of your for being here, and especially the gal who created this site! THANKS!
Marise, Sorry you have to be here but this site is very helpful. If you can get a diagnosis your husband can apply for Social Security Disability if he has paid into Social Security during his working time. I see he is young--but is he a veteran? If so, you might be able to get health benefits through the VA. My husband is 59 and has FTD. He was recently approved for Social Security Disability.
I also posted this under the Welcome New Members thread
Welcome here, Marise. Sorry you are in such dire straits. You will find us all accepting, thoughtful and knowledgeable. We are here to hold your hand through this tragic disease. Have you posted under the Welcome New Members thread? Others will want to know you are here....M
Ditto on the welcome. You'll find that there are many younger spouses here and a wealth of information. You didn't say why, but your husband's symptoms must have made you suspect EOAD?
To answer your question re a diagnosis--if your husband hasn't been to a doctor regarding his symptoms yet, that may actually be a good thing. You should look into long term care insurance for him asap. Once a diagnosis of AD or another dementia causing illness is on the record, he would be rejected for it. It may seem like the cost is high, but once you start receiving benefits under the policy, you generally can stop paying for it. Several of us here have spouses who are covered by that type of policy, and it's a lifesaver. If I were in your shoes, I'd get the maximum coverage possible--it can pay for in-home care, adult daycare, nursing home, etc. There are policies that are good for the entire lifetime and have no dollar limitation. Strange as it may seem, regular health insurance and Medicare don't pay for any of the above--even the nursing home, unless it's needed for another type of illness. You probably should get the health insurance before diagnosis as well--may be easier. After diagnosis, then you can apply for SS disability/VA or other benefits. I know all of this seems overwhelming, but just take it one step at a time--good luck. There are lots of us here ready to help you through the maze of dementia caregiving.
Dear Marise, I cannot stress enough the importance above all else..of trying to get Long Term Insurance for your husband. If he is younger, the cost will be less. I have the insurance, but my Dear Husband thought he'd always have enough money to pay for anything beyond medical insurance and medicare. He did not understand at the time, that any dementia care would not be covered. Currently, a memory care facility cost runs about $5000 a month and as time goes on, this will increase like anything else. FYI, my insurance originally covered up to $3500/month. It automatically increases in benefits as years go on, and now covers up to $4800 month. Just imagine if my husband had that policy!! So many worries would be over.
He will possibly be required to get a physical. Usually, it consists of his personal physician being contacted for previous concerns, and a blood/urine analysis. Just don't volunteer any information. I don't recall them giving us any type of mental exam.
Good luck my dear....and know we're here to help all we can. I've learned so much from other's experiences. nancyb
Welcome to my website. There are a lot of resources and information here. Please log onto the home page - www.thealzheimerspouse.com - and look on the left side of the website. Since your husband is so young, I would sugggest clicking on the EOAD (early onset) section. Other sections that are extremely helpful are: "Newly Diagnosed/New to the Website", "Understanding the Dementia Experience", and most important - "Find a memory disorder clinic in your area", so you can get a proper diagnosis and treatment.
Hello all, and THANKS! Thank God we do have a long term care policy, but it is five years and $200 per day/$365,000 lifetime. I just called the other day and we can increase benefits every three to five years, and the three year eligibility should come out this year or over the next two. I don't know, however, and didn't ask as I don't want to tip them off, whether they will reject the increase if he is diagnosed or if they will accept because we are already policy holders. Any scoop on that?
As far as insurance goes, we did take him to an internist who gave him the blood work up and wanted an MRI but didn't push it because he thinks it will be fine and that he has major depression. So, there is documentation that I am worried but also that my husband is not and neither is the doc. He put him generic paxil 10 mg per day for depression and I've considered calling to say he's responded great just to avoid a pre-existing condition. We have an appointment on Thursday with a GP at a community clinic so we can get on the sliding scale but wonder if I should do that or just wait until we get insurance.
Speaking of insurnace, jobs are scarce around here but I just applied to earn a Master's degree in counseling (was interested in geriatric...had no idea I may be living it first hand) and can get good insurance for him through the University. Will know in two weeks if I am admitted...I am pretty confident I will be. That insurance won't start, however, until the end of June. I could also buy Cobra but THAT IS EXPENSIVE or I could buy him a Blue Cross policy for around $200 per month with a $5000 deductible but then 0% copay...what do you all think I should do?
So many people take Paxil or Prozac that I don't think anyone considers it in job hiring any more. My daughter, who's taken Paxil for years, used to avoid letting people at work know she did - but then she went to work at a pharmacy, where no one cares in the slightest.
in re what you should do, it might make sense to get the Blue Cross policy to tide you over.. Might be better to have him contiinuing on, rather than a gap after which he might be more carefully examined?? But the BC policy would probably demand an exam too.If it were me, I'd hold off on a diagnosis for now, until you need to consider SSDI.
Maybe this is one of those times when it would make sense for you to give him all the things people say help forestall AZ - I don't think they DO, but who knows. Especially maybe look into the coconut oil MCI stuff... since you can't get him on Namenda or Aricept anytime soon.
Since the paxil is helping, maybe it is depression - or a large part of it. Depression can cause memory problems among many other problems. On one of the threads is a list of diseases that can cause similar symptoms as AD. Just remember there are many other causes for short term memory loss.
Marise--Your situation sounds very similar to mine. I went to my husband's internist with him--I had concerns about memory loss, he didn't. The physician diagnosed depression and put DH on Lexapro, even though there was a family history of young onset dementia. Long story short, she was wrong. Lexapro didn't help, I pressed further, he was diagnosed with MCI, probable AD at 59 by another doctor.
On the LTC insurance, I'd be real surprised if they would agree to increase coverage after a diagnosis. A younger person with dementia has to be a really expensive proposition for the insurance company, especially if benefits are paid for the duration of the illness--which can be up to 20 yrs after dx. If you can get coverage increased this year, I'd say go for it. I think Briegull's suggestion of trying the coconut or MCT oil is a good one. Then, by the time the insurance is in place your husband might be more agreeable re pursuing a diagnosis.
Marise, I had wondered when I read your first letter if he wasn't suffering from Depression Dementia. I had not heard of that until a friend had that following the death of her teen aged son. She was a zombie and didn't know her right hand from her left hand for months. Her doctor referred her to a psychiatrist who specialized in this severe state of depression and he was able to pull her out of her bottomless pit, quite successfully. Men are so reluctant to cooperate with psychiatrists - or so it seems to me.
I can tell you that I developed Congestive Heart Failure several years after I purchased my LTC insurance, and they did not require a new physical when I was given the option to increase my coverage - to the next step. They sent me a letter re: increase,... and I "checked the box" under "YES". Crossed my fingers,...and a few weeks later, they sent me a confirmation letter. Whew!
Re: your policy: - $200/day equals $6000 a month. That's $72,000 yr. So that's a little more than five years in care. I'd keep that policy, no matter what. It's at a good level right now. Currently, I'm seeing charges at $5000/mo. in good places, so that would be six years of coverage. Not bad at all.
my dh is 53 and has eoad. it has progressed very fast. it seemed to level off at times and then speed up again. there is no leveling off anymore. he is in stage 7,can still pace in high gear at times,if he gets in the floor he can not get up,he does not understand the meaning of up or down,he keeps his eyes closed most of the time and his head down,chin to his chest,this makes it difficult to feed him,give him meds [crushed in applebutter],shave him,and bath him. i have to keep telling him to open his eyes,he doesn't understand what that means,to him having his eyes closed is the same as having them open. he does open them when he paces,but when he stops and stands still,most of the time he has them closed. he does not know how to hold his head up anymore and he just will not set back in a chair,he leans forward,with his head down,and constantly tries to get up,alot of the time he ends up in the floof and no matter how many times i get him up and set him back down he will do it again and again and again..... it totally wears me out. sometimes i just have to let him crawl around in the floor until i think maybe he will set for awhile if get him up,sometimes it works,sometimes not.it is hard to get him to lay his head down when he finally goes to bed,be holds it up off the pillow until he finally goes to sleep. no one in his family has had ad. his paternal had some type of dementia,but she is the only one that we know of. it is a large family. jav
jav, I hope you have help in caring for your husband. It does sound totally exhausting. marise--I agree with Nancy that the coverage you have sounds good. One reason to increase it that you would possibly have more flexibility in using adult daycare and bringing help into the home, without worrying that you'll use up the coverage. My husband's policy is lifetime, no money limit, so I have been able to have him attend daycare for 2 1/2 years already, which is an enormous help to both of us. His cognitive decline has been progressing very slowly, and I credit the daycare attendance as a major factor. If left to his own devices at home, he would sleep a lot or watch tv, which wouldn't be great for his brain!
Buy some kind of health insurance. Any kind you can manage. As long as a policy is continuously in place pre-existing conditions do not apply. If there is something that the "current" insurance company thinks is actually pre-existing, they will go after the previous companies on their own to get paid back by them. You won't even know it is happening. But, for that to happen, you HAVE to have continuous coverage.
Today I heard Karen Tumulty talking about health care problems, which she reports on for Time Magazine. Her brother, who has Aspergers, worked at low-level jobs and switched from one to another where there was no health coverage. He bought the high-deductible ($2500) individual insurance, six months at a time. This went on for a few years and then he came down with kidney disease and immense bills. Which the insurance company refused to pay because he had a "pre-existing condition," a doctor's recognizing that something was wrong in the physical he had during the previous six-month policy. The policy he'd had THEN had expired. He had a NEW policy and hadn't told them about his "pre-existing condition" (didn't realize it WAS a condition per se). Karen was saying be VERY careful if you get independent insurance. (she was also saying that meds etc are MUCH more expensive if you're not in group coverage of some sort. Like ten times more)
On the NYTimes Science section yesterday there was a short article about Alzheimer who identified the syndrome named for him, in a 55 year old woman. I'd forgotten that for years ALzheimers referred ONLY to what we now call EOAD; oldies who had problems were described as senile, or having senile dementia.
The Times article says: In 1906, when Alois Alzheimer, a German psychiatrist, autopsied the brain of a 55-year-old woman, he saw under his microscope the characteristic amyloid plaques and neurofibrillary tangles of dementia.
These were phenomena already well known, and Alzheimer never claimed to have discovered a new disease. Rather, he was presenting an unusual case of the ailment in a younger person, and he referred to it as “pre-senile dementia.”
It was his colleague Emil Kraepelin who first called it Alzheimer’s disease in 1910, some say in an attempt to publicize the accomplishments of his academic department. In any case, there was widespread skepticism that Alzheimer had found anything new, and Kraepelin’s designation did not immediately stick.
It was not until May 16, 1935, that The New York Times first printed the words “Alzheimer’s disease,” in an Associated Press dispatch. “Only about 100 cases of this particular kind of premature senility, which strikes between 40 and 60 years of age, have been reported,” it said.
Alzheimer’s disease disappeared from the pages of The Times for the next three decades. In May 1968, in an article describing tests of a senility drug, Jane E. Brody distinguished between dementia and pre-senile dementia, but did not mention Alzheimer’s.
Then on Nov. 27, 1969, Dr. Lawrence K. Altman, paraphrasing a physician at a research institute in Staten Island, wrote of “Alzheimer’s pre-senile dementia.” By the late 1970s, the name was firmly established, and a search for Alzheimer’s in The Times’s database after 1977 yields more than 5,000 documents.
When I was in medical school, Alzheimer's Disease was "pre-senile dementia", as briegull said. Anyone over 65 with memory loss was just "old" and entitled to dementia. Around 1977 it was decided that, since the pathology is the same in "pre-senile" and "senile" dementia, they should be lumped together. The entire spectrum was called Alzheimer's Disease. The problem this presented is that doctors who went through school after 1977 see AD as a disease of old people, since the majority are older. Thus they do not recognize the early onset cases.
Marise, you might want to consider that if you can still get him on COBRA, there will be NO exam. If you apply for Blue Cross and he needs care soon, they can deny coverage because you failed to disclose. It might be better to avoid any more exams now until you have your long-term care situation settled.
To everyone else, I have not posted here before because I am not an AD spouse. I wanted to educate myself about this disease for various other reasons and discovered this site on a Google search, but I did not expect to see such an incredibly warm, caring community. I am filled with admiration for each and every one of you. Every day, you show what the very best of humanity can be.
Marise, My husband is 56 and starting showing symptoms about 3 years ago. About 1.5 years ago he was "put on leave" at his job (a new one as he had been laid of his prior one) after only being there a month because they knew something was wrong and were nice enough to let us try and figure out if it was "fixable" before they let him go. We went thru the whole trying of depression drugs, spinal tap for vaious diseases, MRIs, etc. It was a PET scan that finally showed he has Alzheimer's.
We are on COBRA and tho it is expensive, it is a lifesaver because all of the other individual insurance plans I have checked into have the pre-existing condition clauses. I would not do any more exams either until you get insurance. I would definitely go with the COBRA to be safe. It would be horrible if you went on a new individual plan insurance and then they came back after you had tests done and said they were not covering it. Some of those tests are unbelieveably expensive. We had been pre-approved for the PET scan and then AFTER we had it the insurance company said it was an experimental test and wouldn't cover it. The cost was $10,000. I appealed 3 times and finally won.
AND, if you don't have adequate life insurance on him, I would try and up that now too before you get any more doctor's exams. Luckily my husband had an individual life insurance policy in addition to the one thru work - but since we don't have the one thru work anymore, it would be nice if we would have had a larger sum on the individual policy. We also had a clause on it where we don't have to pay the premiums as long as he is disabled, which has been a huge help!
Also apply for Social Security Disability as soon as you can. We luckily got SSI the first try. I bugged the crap out of Social Security. Wrote a VERY detailed application (even submitted a copy of an illegible birthday card he had written me) and called them every week to check the status. I think they finally just got sick of me and approved it! So be the squeaky wheel on that.
Do you have a good financial planner? They can sometimes help analyze all the insurance stuff. If you don't have long term care insurance you will either have to use your savings or go on Medicaid (which is what we are going to have to do.) There are attorneys that can help you do Medicaid planning to protect your assets so that YOU will have something to live off of. So it may be wise to keep the Long Term Care insurance...