My dh was just last week given the "early AD" diagnosis. Not a huge surprise to me as I live with him and have noticed for some time the repeated questions, anxiety in unfamiliar places,inability tod eal with finances anymore, etc. Anyway, of course, I have lots of questions.
First: Drug treatment: I've read that Aricept (and others) prove useful (maybe) 50% of the time and will improve the patient's declining cognitive abilities by perhaps 1 year. That's one more year of living with this dreadful disease, not anything to look forward to. Am I missing something here? I'd like comments from those of you who's spouses have used these drugs as to what you have found - are they worthwhile or not?
Second: I'm clueless as to doctors visits, clinicians, therapists, etc. How many professionals should I expect to be interacting with and how is this network developed?
Support Groups: For me or him? Do we go together or is this really going to be more than he will be able to comprehend?
Medicare/Medicaid: How are these huge expenses paid?
Okay, I guess that's enough questions for now.
I'm grateful for this group and your combined experiences. In my experience, it's people like you who are in the "eye of the storm" who are the most knowledgeable and helpful.
I can try to answer some of your questions from my experience. 1. Aricept and related drugs may delay worsening of symptoms for a while, but will not stop progression of the disease, so they don't add any more years, only (hopefully) more months of better funtion. My wife got sick from Aricept and is now on Exelon patch. I really can't see that it has done anything. 2. If your PCP (Primary Care Physician) is comfortable making the diagnosis and managing the medications, including those for anger and rage, you should stay with him/her. He/She may want a neurologist to confirm the diagnosis and suggest treatment, but the basic care should be by your PCP. As an aside, since there is really nothing that can be done for Alzheimer's Disease except symptom control, your PCP's primary job is to keep you, the caregiver, healthy. 3. Definitely, get in a support group for you. If you can find one that also has a section for the patient, so much the better. But, be sure you get in a group. 4. Medicare pays some of the expenses for those over 65 or on disability. Medicaid helps out when you have run out of all other funds. This is a very expensive disease and is a leading cause of bankruptcy. My out of pocket expenses are running so high, even with medicare and part D medicine insurance, that I have not paid any federal or state income tax for the past 2 years. Expenses not covered by medicare include - medications (we're in the donut hole), adult day care, in-home care, Depends, etc.
One thing you didn't ask, but is VERY important. See an Elderlaw Attorney ASAP to get every thing in order - Power of Attorney, Medical Power of Attorney, Wills, transfering assets into your name, protecting investments and bank accounts (the patient often will make very bad investment decision and/or spend money unneccesarily), etc.
I agree with everything March has said. My husband (who has FTD) is on namenda and aricept.
If your husband is a vet, and you are interested in having him attend day care, check with the VA regarding help with paying for day care. My husband attends a VA-contracted day care three days a week and they are paying most of the cost.
mothert, Welcome to our group. You have come to the right place! Our group is made up of people with spouses in all different stages. But I am sorry you have to joing us. Alzheimer's is a heartbreaking illness.
As Marsh said, get your paperwork done NOW!! Very critical. As AD (Alzheimer's Disease) progresses it is to late and may require more legal work to achieve. AD is a long, long road. Learn everything you can about the disease...the internet is full of sites. When you are informed, the declines and changes are not quite as much of a surprise. Get everything in place way before you need it.
Your life as you know it will change by the day, week, month and year....expect it. The early stages seem so tough but later you will realize that they were not so bad compared to what came in later stages.
Read all you can on this site, home page and forum. There are a ton of "truths" here. A lot of the advise you get will be from people that have not "lived" it like we have.
As Marsh said, your PCP can handle most of your needs. My husband has had AD for 10 years and our PCP handles most of it. Since AD can not be cured, the primary needs are keeping your DH (dear husband) issues managed, and helping you when you need it.
So far as Aricept and Namenda, my husband took both for a while. In stage 5 he told me he could think clearer on the days he did not take it. I proved he was correct and we talked to the doctor. He said to stop taking it. Which we did. This is best worked out with you and your PCP. Just be opened minded about what it can and cannot accomplish, and what you observe for your self.
A lot more people will be along soon with great advise. Hang in there. Ann
Mothert, welcome to the site. You have come to the right place. The advice given above is great. I have one thing to add about the AD medications: I had the same doubt as you do as to whether I wanted to have an extra year of this, but what the neurologist told me is that these medications do not extend the patient's life. They may do something to arrest decline in the first part of it, but the patient will "catch up" later. My husband was put on Exelon and, while it has not seemed to delay his decline at all, it did make his behavior in the early stage more acceptable (less anger). Now he has been on it for 18 months and I think it has stopped working altogether. The medication that has saved my life this year was Risperdal, an anti-psychotic, which suppresses anxiety and has made him much easier to live with.
You can read much much much about all these issues on this site and my advice to you is: learn to use the Search feature, and read, read, read.
My husband has also been recently been put on Risperidone (the generic for Risperdal). He was being non-compliant, and part of that was wanting to take off and walk on his own. Last year he took 2 hour walks every day and came home on his own with no problems. This year he is no longer able to do that. He can walk that long physically and I'm not sure he could find his way home either.
He is still on a very small dose, but things have been a lot easier around here. I'm still watching closely to see if there are any side effects of the drug, but so far there are not. He might need another small increase since we are still tweaking it.
My husband is also on both of the dementia drugs. He is on Namenda and galatimine (generic for Radzyne) (spelling is probably wrong on both of those). They gave him a LONG plateau which is now over. But they might still be keeping him out of diapers and walking around the house and feeding himself. I'm not taking him off them at this point in time.
Welcome to my website. You have come to a place of comfort for spouses/partners who are trying to cope with the Alzheimer's/dementia of their husband/wife/partner. The issues we face in dealing with a spouse/partner 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/partner.
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. There is a tremendous amount of information topics - just keep scrolling down on that side, and most of what you are looking for will be there. 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 section on informative videos, and another excellent resource - Early Onset Dementia - A Practical Guide. You can go to the top of this page, click on "search", and type in EOAD, making sure the "topic" circle is filled in. All of the EOAD discussions will come up - there are about a dozen of them - if EOAD applies to you - not sure what age your husband is.
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 "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Type in Support Groups and the blogs I have written on that will come up. Log onto the home page daily for new blogs; news updates; important information.
Well, thanks to all of you who have responded to me. As I could see this coming on my husband and I updated our wills earlier this year. Good thing, too; as I was collecting all of the financial documents required by the ElderLaw Attorney I found many statements that I knew nothing about. When I asked my dh, I got blank stares and it took me months and many emails allover the world finding out what these accounts were, what they were worth, etc. I was so thankful that we got started before he lost all ability to relate to any of them. All this to say that we did get our wills and power of attorney, etc all updated; but as we didn't have his diagnosis at that time we didn't address his AD. Now I must go back to protect what we have and get all of the other help he can offer us.
Our daughter got me in touch with a councelor who specializes in dimensia and we will visit with her after we see the attorney. We have one daughter who is and will be very helpful to me and the other is in total denial about her father's dislease. She thinks her sister and I are overreacting. Of course, she knows absolutely nothing about the disease. She is into one of those voo-doo religion (that's my definition, anyway) things and thinks that she can overcome all with her power of positive thinking (I call that denial). Not sure how to handle her, either.
Please, all of you, keep your comments coming as they are very helpful.
You said he was diagnosed with EOAD - how old is he? If not already, is he on Social Security Disability or SS? EOAD is now fast tracked for so it can be easier. My husband is 62 and had no trouble it took about 3 months to get approved (this was before it was approved for fast track).
My hb is on Galantamine. We tried Namenda but he had side effects we choose not to live with so I discontinued it. It is true they only work on 50% or less and they only allow them to keep cognitive function longer while the disease progresses on. I look at like this: the apple is rotting in the inside but on the outside it looks fine. Some people have had good results but unless you remove someone from the drug one will never know if it helped.
I have gone to one support group meeting a couple months ago to see what it is like (I went by myself).It seemed OK and has a group for the AD person. I don't know if my hb will go. I have not gone back cause it is only once a month which is hard to remember!!
My hb has medical thru the VA which I like in that his medicine is only $8 for a month supply no matter what it is. When others have mentioned how much it cost them for their AD drugs, I am so thankful cause I would not pay that much for something with so little benefit (in my opinion). He sees his neurologist for the AD related and PCP for everything else. I asked the PCP about it and that is how he wants it. The negative with the VA is that they only treat him, not the spouse too. I have no medical insurance so do not see a doctor so any support I need will come from here, research and natural supplements.
My DH was on Aricept but lost 18 pounds in 2 weeks and actually got worse so his PCP took him off and we didn't put him on anything else. Sorry you have to deal with this but this site will help you with the questions you may have from day to day.
My hubby just turned 80 in March, I'm 57 and we've been married for 27 years. He's been collecting SS for quite some time - he isn't on Schedule D (I don't think that helps anyway, does it??). He's in otherwise fabulous health. He has glaucoma, high bp and prostrate issues, but nothing too serious; he still walks everyday and plays golf. His hearing stinks and I've finally convinced him to get hearing aids, which I think will help with his isolating himself (he misses most of all conversations at this time). I believe he's in Stage 3/4 - not quite all of 4. I did see on the Canadian drug site that you can buy generic Aricept for a fraction of the cost of namebrands. Do any of you have experience with generics? I've bought drugs online through Canada many times and have been totally satisfied (especially with cost). I tend to agree with you, Charlotte, about the cost/benefits value with these drugs. I'll see what the doctor has to say and what my dh has to say.
He is easily offended, but he has always been that way. The good news is that he doesn't stay mad at me as long as he used to. The bad news is that I can't really reason with him much anymore. He still loves affection from all of those he loves and has become really, for the most part, easier to deal with. He turned over all of the finances to me this year and that's when I knew something was really wrong and I wasn't just imagining things. I never even knew before how much we had or where any of the money came from (Mr. Control, you get the picture?). It truly breaks my heart to see my Alpha Male losing it before my very eyes. However, as several of you have related above, this is only the tip of the iceberg. I don't relish the car issue or the removal of his precious guns from the house, either. Last night I asked him how his car got the big scratch on the front fender and he almost bit my head off (you'd of thought I'd done it). PTL, I managed to maintain my cool and let him stew about it for awhile and then talked about getting it fixed. Oh my, this isn't how I imagined getting old.
Theresa, you have definitely come to the single best site both for learning a lot and for seeking comfort from the only people who can really relate to what you are going through ... we who are going through the same thing. I echo all the advice above, but there is another route you can take for medical supervision if such an option is available to you nearby. My wife, who just turned 64 two weeks ago and is moving from early to moderate stage AD, is enrolled in a longitudinal research study and a Phase III clinical trial at an ADRC ... Alzheimer's Disease Research Center. ADRCs around the country are almost always on the campus of major medical centers or hospitals. One advantage is constant monitoring of her condition by a gerontological psychiatrist specializing in AD ... at no cost to us. In fact, the medical center even provides a limo for round trip transportation for every visit ... again at no cost to us. They also pay for the Aricept during the year long clinical trial. So, you may want to see if there is an ADRC nearby who will accept you into a clinical trial or longitudinal research study! My wife has received several complete physicals, neurological exams, etc. these past 6 months since entering both the study and the trial ... all at no cost to us, other than time. Beyond that, I would also strongly emphasize the importance of finding a local support group if you can. (Not always easy, I know!!) If lucky enough to find a group led by a skilled facilitator (almost always a social worker), you will have a group of people with whom you can talk freely and learn a great deal ... just as if sitting in a room with all the people you'll 'meet' on this site!
Theresa, I misread the early AD to mean Early onset which it definitely is not. You are the same age as I am but my hb is only 62. We have been married 39 years. There are many on here that have the big age difference. They will understand more than me that part. Beings he is 80, he may progress very slowly - or at least that is a general consensus here - the younger progress faster, the older slower. One thought is the cause is different. For my hb it runs in his family so the diagnosis was not a surprise. I pray that he will go quickly and not slow like his dad who is 25 years into this disease. My hb is probably stage 4/5 but I like to just stick to mild, moderate and severe. The doctor upped it to moderate to get the VA to cover Namenda. His last MMSE score, which is a small barometer of their losses, was 17, down from 22 in January. He sees the neuro late June so will see what it is then. Might have been a bad day cause he remembers more stuff now since being on the Namenda. So either it helped some or this is a phase. Time will tell.
It is good he is still able to do things he enjoys. Let's pray that the walking and golf stay around for a longer time. The first thing to go is their reason button - everyone here will tell you that. In my opinion the reason button and short term memory are connected. There is a lot to read and digest in this site - more than you will get anywhere else. And you will get scared reading some of it but keep in mind many AD victims do not experience them all -especially the violence and anger. My hb's dad never did and I am hoping he does not either.
I wish you didn't have to be here but this is the best place to be when you need to. I totally agree that a sense of humor is very important and another things I have discovered that helps is to not think to far in advance. Take each day as it comes. Keep comeing here for support, it is your life line.
Theresa: So sorry you have to come here, but, this is a wonderful place for advice. I agree with most of the suggestions noted above so I will only add that my experience with Aricept was absolutely horrible. My DW had diarrhea continously and I didn't know for sometime why. And, guess what - she didn't care so I ended up having to take care of the situation (would you beleive in Walmart). So, in our case, Aricept didn't help anything. We then tried Namenda, but, she was declining rapidly and it didn't help at all.
However, others have been helped, so use your own judgement.
On the legal paperwork, etc., I almost waited to late to get my wife off of our Trust Account which owned our home. I did do it just in the nick of time and I sure was glad when I had to sell it last month. Thank goodness for that piece of paper.
Wishing you well and looking forward to following your progress.
Theresa--I didn't see a reference to where you live, but you should contact your local Alzheimer's Association and see if they have any Early Stage support groups going on. Some Chapters (ours in Maryland is one) has a great support system set up for those newly diagnosed and their spouses. That and this website will help immeasureably in getting you through this ordeal.