Hello all. My daughter told me about your site-I've never participated in a chat or message board before but haven't found any good information from other sources. Ray (husband) was diagnosed about three months ago. I must have missed a lot of signals/behavior for the past couple of years. He is a solid stage three leaning toward 4. About us- I am 57; he is 65. He retired early (at 63) because he was having trouble focusing at work. We all thought it was stress.Then maybe he wasn't always "in tune" since he is hard of hearing. We got hearing aids= Some improvement. Finally, got the word it wasn't going to get better. Now what!!!! Right now I'm stressing over the "what ifs" or maybe I should say "when". Changing the way you go about your relationship after 35 years is a challenge at best. We haven't told even our closest friends yet. I'm going to be reading over your comments to glean what ever useful information I can but if any of you can tell me where to begin this journey, I'd love to hear from you. Thanks much. J
Welcome jodij! thank goodness you found this site for spouses of AD. its the best place for info and online contact with other spouses who are where you are or more along in their journeys. check out the home page of Joans website first there is lots of info there on the left side panel. There are so many who are just beginning this dread journey but together with other members here it makes it all sane and easier to accept. ask anything and someone will have an answer or at minimum support. divvi
Welcome Jodij, I am so sorry you have the need for a forum like this one, however, you will find lots of valuable information, others who share your concerns, somewhere to vent if needed, where there are no judges. My husband is was recently diagnosed with FTD, after many test for the last 5 years, that never really gave a definite diagnoses even though his memory declined every year. He also retired early do to problems at work beyond his control. He is 57 years old. Others will be along to welcome you. You might want to check out the post "Where Are You From & What Are The Ages"
Welcome jodij...this site will be your best friend and a life line to the journey you will be on. Those that have been here longer then me can help explain your journey. For each one of us it is so similar and yet is so different. Since you probably have so much to question and learn I will not take this time to comment on my experience...but, trust me....you have come to the right place.
Welcome to you jodij! You'll receive support and sympathy here and will also learn a lot. When my husband was first diagnosed in 2004, I was strongly encouraged to get a Power of Attorney and other legal papers done asap - - while my husband could still sign his name. So glad that's all taken care of.
Welcome Jodij, As everyone has said, this is the place..it will be your lifeline as it is ours. I wish I had access to it earlier...answers always at the ready..or at the very least, support and needed humor at times.
jodij, if you can cry go ahead a cry. Locking yourself in the bathroom with water running helps I'm told. I couldn't cry and still can't. Sooner or later that is going to catch up with me.
This isn't one of those emergencies, but we all go into emergency mode over it. Unfortunately we aren't talking about something that will last a few horrible months and will then be over. Emergency mode will kill you.
Make sure that you continue to have a life of your own. Time for the things YOU enjoy. Time alone. This disease will isolate you. Don't let it. The first rule of caregiving is taking care of the caregiver.
I've been through the whole caregiver business with my parents who died in 2000 within 18 days of each other. But that's another story. Wasn't expecting to do this again so soon - Then AL moved in and here I am. Was reading over the "things I wish I was told" section. Great info I can already identify with and some things I need to do. One of my biggest concerns is how do I continue to work as he gets more difficult. Adult day care; in home care? I don't think we can afford for me not to work and I really hadn't planned to leave anytime soon. And,of course, nest egg isn't what it was several months ago!! I guess I'm blowing off the "one day at a time" thing. It's just my head is spinning with tons of questions.
Welcome to my website. You will find a lot of support and information here. And spouses who understand the unique issue related to Alzheimer's Disease and marriage. Please go to the home page of the website - www.thealzheimerspouse.com. Look at the sections on the left side of the website - I would suggest you start with "Newly Diagnosed/New to this site" - good information and resources in that one. Then scroll down to EOAD (early onset Alzheimer's Disease, and read that one. I write blogs almost every day discussing the issues, struggles and challenges I have faced in trying to deal with my husband's AD, so be sure to check into the home page daily for the blog, daily news, and updated announcements. I would also suggest clicking on the "previous blog" section and scrolling through the topics. I know there are many you will identify with. Read the "welcome blog" first. Also, on that left side, is a section called "Understanding the Dementia Experience". It is an excellent resource.
jodij, one of the things you are going to discover is that although pain is pain, grief is grief, being the spouse of a dementia patient is DIFFERENT. Even if what your parents had was dementia it is still different. And if they didn't have dementia, it is going to be different in ways you can't even begin to understand until you live through it.
Hi jodij. How did your daughter find out about this lifesaver of a website. Now you will never be alone. We will be with you every step of the way. I live in Florida. My husband has FTD. Nora
Thank you joang for this web site. I can see already it has been a lifesaver for many. Will look over all the info asap. While I'm sorry we all have to meet under these circumstances, I am greatful that there are many new friends out there to help and support.
jodij, I found this web site while gleaning for information on the regular alzheimer's site after my DH was diagnosed a few months ago. Joan had invited someone whose spouse had AD to come here. Yes, we thought it was stress also. My gosh, I don't know how I would have survived without this group. My mind was whirling, I was scared and I felt like I was sinking. Everyone is so helpful and you can just feel the love and compassion here. A warm welcome. Together we will get through this.
Wecome jodij! My husband has FTD- was diagnosed 1 year ago. I only found this site a couple of months ago but it has been a great learning experience. Every one is caring and helpful. It has taken me most of the past year to come to some kind of terms with everything but I am getting there.
Welcome jodij. I am working. I believe my husband is entering Stage 6. I am in the process of getting a home care aide for 2 hrs a day to start with. This site has been a lifesaver for me.
Hi, jodij: Sorry for the reason you're here, but glad you are here. I was on another site and someone answered my post and suggested this site. I've found it invaluable. I've learned more since June or July than I'd learned in the last 2 years. First suggestion, take care of yourself first. Don't forget your social life. Take one day at a time. You won't pay attention to this, but do try not to worry. I'ts not productive and it will wear you ouj. :)
The very first place to begin is to remember to breathe... !
Your husband is still at a very early stage, and usually AD progresses very slowly in the early stages. You have time to slow down, get over the panic, and think things through.
My husband and I had worked together for years. I was getting increasingly uncomfortable about the problems I observed, and finally insisted he see a doctor. After months of testing, he was diagnosed with moderate AD. He was put on Namenda, and his symptoms improved a lot.
He was not at all comfortable with other people knowing about the diagnosis. We didn't tell anyone at work etc for almost a year. He still came in to work with me, and kept himself occupied surfing the web, watching what was going on in the complex, wandering outside to talk to friends from the other companies ... or resting in his office when all of this became too tiring for him. Little by little, I'd already taken over his responsibilities ... none of the staff really noticed, since he and I had always worked closely together. Finally, when it looked to me like some of the staff were beginning to wonder about some things he'd said, I asked his permission to tell them. By this point, he'd gotten more used to the idea, and didn't object. They were great, continued to consult with him over problems just as they used to, chatted with him when he went into the labs, and looked out for him.
Close family probably need to know right away, people who can help you need to know, others ... see how your husband feels. Do what makes him comfortable. (That's my two cents ... others may not agree!)
Once you're breathing again, find a very good, preferably certified, elder law attorney who specializes in trusts and estates and is very, very knowledgeable about Government support programs. You will want to be sure you have all the paperwork in place. In particular, you will want to be sure that you protect your assets, so that your husband can access the support programs that are available and you, yourself, keep the rights to your share of assets. This is a complex area of the law, so you want a lawyer who knows his stuff.
This will also help you decide whether you do need to keep working and for how long, and what sort of help you can afford for your husband while you're away. Costs for things like adult day care may be subsidized, depending on your financial status etc. In-home care may be tax deductible (see the current thread on this subject.)
I, personally, did not like the idea of sitting there waiting for AD to do its worst, so I looked at the clinical trials for new AD treatments that were recruiting patients in our area. The only one for which he qualified at the time, that I thought was worth much, was for huperzine A. He was in the trial for two years, and on the drug itself for at least 18 months of that, probably the entire time. Between that and the Namenda, he has held fairly steady. That trial only lasted two years (although I can buy the huperzine A over--the-counter, so he's still able to take it.) I'm looking at other possible trials now ... there are some very exciting new drugs coming down the pike. Today, I'm calling for an appointment with his neuro (who happens to be the Principal Investigator on one of the trials that just started recruiting), to discuss pro's and con's and see if my husband qualifies.
Jodij, Sunshyne gave you great advice, as usual! <grin>
I would add that I am still working and my husband is late stage 6 with the beginnings of stage 7. I HAVE to work. We have to have my income and insurance, especially with his AD. I was able to get up a little earlier, make certain he had breakfast and had a hobby to do, or earlier in this disease, a list of chores to do. I would call him in the morning and afternoon to check on him and see if he had marked off the items on his list for that day (he can't do any of that any more, but it took us through the first year). I have investigated the day cares and in-home cares in the area, along with churches who offer adult day care once a week (so if you have five of them in your city, you could use them for him when he needs them). There are a lot of people who sit with AD patients as volunteers or for a price that is less than the in-home care centers charge, if you are fortunate enough to find one. One lady lucked into hers (even though she thought she might have 6 more months before needing someone) when an AD patient died and the woman told her that the lady was looking for someone else to take care of! She knew the lady was a gem, and she also liked to cook and clean while she was there. It was perfect for her.
I'm almost as lucky, in that now that my husband needs someone to look after him, my grandson who will soon be 19 and has graduated from high school and wants to attend the culinary school, agreed to live with us and take care of his grandfather for the next year or two! He also loves to cook, so I have dinner prepared for me Monday through Friday when I get home from work!
So, you see, there can be bright spots that keep you going! Right now, as Sunshyne said, keep breathing! Also, you will know when it's the right time to tell different friends. With your co-workers, it is better to tell them right away. Most will understand and be there for you. You will need a sounding board (other than here) at times. Also my boss is very understanding when I have to have time off to take him to the eye doctor, physician, neurologist, and dentist.
There is a lot of reading here in the different discussions that can answer a lot of your questions, or ask us again! We'll be glad to help you!
Sunshyne, thanks for the information and "pep-talk". You as well, Mary. It's great to be making new friends who have been there.
Need to contact the attorney-Alz Assoc gave me a list in this area. Also, we have access to Veterans Hosp and funds. They were actually the first to suggest AD might be the problem.
We were offered participation in drug trials but were a little apprehensive. Neurologist started going over possible side effects. Husband said "I know what I have-I don't know what I'll get (from the drugs)." Also, participant is not necessarily receiving the test drug, maybe just a placebo which I think would be a waste of time.
Would appreciate feed back and suggestions on this. I will check the other boards for previous discussions on same.
Clinical trials may be designed in different ways. Some of them are "double-blind placebo" only, which would mean that your husband would typically have a 60% or higher chance of getting the drug, but would still have a fairly high chance of getting placebo. In such a trial, if the drug is very promising ... well, it would be very disappointing not to get the drug, but on the other hand, you KNOW your husband can't possibly get the drug if he's not in the trial. And sometimes, placebo patients benefit anyway, from the so-called "placebo effect", which is very real. (It can sometimes make it look as if the real drug is not quite as effective as it really is, since the placebo patients often do better than patients not involved in the trial at all.) And they can also benefit just by feeling that they're "doing something" to fight back for themselves, or to help others in the future.
Many clinical trials have a double-blind placebo stage followed by an "open label" stage. That is, once a patient has gone through the double-blind stage, no matter whether he was on placebo then, he will definitely get the drug in the open-label stage. This gives your husband access to a promising new drug years before the drug goes on the market.
Finally, some clinical trials are entirely "open label." That is, all patients in the trial get the drug, although sometimes they test different dosages.
For some trials, whether you're placebo or not, you may have the opportunity to get the drug at the end of the trial, if the safety data look good.
The earlier the phase of the trial, the less that is known about safety. By the time a drug gets to a Phase III trial, there's a pretty good handle on potential safety issues. (Besides, you never know how you're going to respond to a drug, even one that's been approved. Try looking at the side effects you can get from aspirin sometime.)
I research the background of the various investigational new drugs (INDs) that are recruiting in our area, to see what sorts of safety issues there might be, what evidence there is that the drug may work (animal studies, Phase I human trials, Phase II human trials, etc), and the mechanism(s) of action (will it simply help the patient function better, or does it have the potential to actually treat the underlying pathology.)
We were accepted by the huperzine A trial, and I'm very sure it did my husband a lot of good. It was six months of double-blind followed by 18 months of open label. It has ended now, but my husband is still taking the drug.
We were offered participation in one trial that I felt did not offer enough benefits to justify the risk, and I declined. (It's a genetic engineering approach, and required that holes be drilled in the skull to inject the drug directly into the brain. Makes me squirm just to think about it.)
We were excluded from a trial that I wanted (nuts) for lecozotan, and will probably be excluded from the bapineuzumab trial which looks very promising.
There are two other trials either just starting up or expected to start in the next few weeks. Both of these are very interesting, and the safety data so far looks pretty good. One is RAGE (and no, it's not about anger, it's an inhibitor for "receptor for advanced glycation end-products") and the other is GammaGard, which is an antibody drug (somewhat similar to bapineuzumab) already approved by the FDA for other applications. I will be talking soon with my husband's neuro about possibly getting into one of these, and which he, personally, thinks has the most potential.
There are other trials recruiting here, but I'm not interested in them. I think they're more "band-aid" approaches, and I would not want my husband to go into one of those, and then be unable to enter a more promising trial, if one comes along in the future. And there are some very promising drugs currently in Phase II ... if those trials continue to go well, Phase III might recruit here.
My husband is now many years into this world of AD and it has been something none of us could have imagined. In the beginning, I was always looking for answers or comparisons or reassurance..........God knows, half the time I didn't know what I was looking for..........the desperation to find something that would make this go away or not be real was the mind set I was in. I didn't find support groups to help much since usually there was no one in my situation and that being the early onset AD which starts much younger in life. Most of the people in those groups had a much older parent or loved one. As I've said before, I take nothing at all from those dear souls......this is a horrible nightmare for anyone who has this or is effected by this. But I just wanted to connect with someone more our age and have the opportunity to share and also receive info. I only discovered this website a couple of weeks ago or so..........and OH.....how I wish I had discovered it ten years ago. I have struggled all these years pretty much by myself (in the sense of those going through the same thing). But, I now look at this web site everyday......many times a day......and have received more information and support in a couple of weeks than I ever did in ten years. It certainly isn't a family of friends any of us would have wanted to belong but how I thank God now that you are all out there and willing to share and show compassion and so much more. Whether we like it or not, we are all in together and it has made me realize that we are all sharing pretty much the same trials and errors......depending on what stage of we are at. So thank you dear friends........I needed you so badly!
anitalynn, I'm so sorry you had to go through years of this without the support of this group. I found this site just a few weeks after my DH was diagnosed. It's truly a Godsend. I can't imagine going through this, especially when you're younger, without others to share with. I'm so glad you found us. It's such a caring group.
Sunshyne, I appreciate the information on clinical trials. I'm thinking about checking to see if there are any of the good ones in our area. It's so hard to just do nothing and wait for the next shoe to drop.
anitalynn - I can relate to some of the same things you did. I am 70 and H 73 but I tried to talk myself into he getting better, must be something else, and I think that is good, because sometimes Drs. are wrong and maybe a tumor, or something else can be mimicking AD.
Also, before this site, I was alone with my family in this. I think there may be many people in your area with similar symptoms as your H and they are still in the closet. I personally called 3 aquaintances I knew whose H had Dementia and they were reluctant to talk about it and NEVER called me back. In one case the wife told me her H was still driving (like he isn't really bad). My cousin told me, Yes he is still driving but her sister told her the wife has to direct him on when to turn, which way, etc. I am sure many of you can relate to that. I know I can. One of the first things worrysome with my H driving locally was in town where there was a turn on green arrow only sign, he would turn anyway, across traffic. Scarred me to death a couple of times. Once I laid down on the seat, when he wouldn't let me drive. I told him when we got home I was NOT riding with him anymore. Then we limited him to within a mile of our house which is out in the country and no stop lights and soon afterward stopped altogether after the Neuro said we had to get him off of ANY road with any kind of motorized machine.
As you have already found out this is a great site to learn new things and to vent. Many days I have no one to talk to except one of my children calling me. And, no one understands like another spouse in the same situation. Been there or going there.
Sunshyne, I wrote down the names of the ones you thought were good ones, Rage, GammaGard, Lecozotan, Huperzine A and the Bap trials. If there are any of those in our area, I will need your advice as to which ones to try. My DH has other health problems which may prevent his participating but it would be worth checking into.
Dazed, lecozotan and huperzine A just finished up. If the data looks good, there might be another, bigger lecozotan trial at some point in the future. I'd be surprised if they do any more with huperzine A, though, since it's readily available over-the-counter. Preliminary results from the first six months of the trial looked good, haven't seen the final conclusions from the full two years yet (too soon for them to have crunched all the numbers.)
There are some other intriguing drugs, but they're not being tested here and/or my husband didn't qualify, so I haven't really talked about them -- dimebon, for example, and Rember.
Go to
http://clinicaltrial.gov/ct2/search
and search for your state and Alzheimer's, look at the trials that are recruiting. There will be a detailed list of locations toward the bottom of the page of each trial -- if the trial is pretty big, the list will be "collapsed", so you may have to click on the "+ Show Study Locations" link to see exactly where the trials are being done.
I just went to this site, Sunshyne, and Wow! I didn't know there were so many clinical trials. I have to go out now and won't be back until late this afternoon but I'm going to thoroughly search this site.
On my home page - www.thealzheimerspouse.com- there is also a section on the left side towards the bottom that you can click to research clinical trials.
Thanks, Joan. I didn't know that. I thought I had read almost the entire site but guess I missed that part. The improvement you noticed in Sid after just one infusion on the Bap trial gave me a glimmer of hope. By the way, your blog about being afraid to enjoy the improvement of him being more himself because of fear of a letdown later was a good one. It's hard to have hope when right now this disease is fatal. We just have to enjoy the good days and try to cope with the bad ones. I really hope his improvement is permanent. That would give hope to all of us here. Keep us informed.
Sunshyne, I wonder if you could give me some more information on Huperzine A. I have considered it for several years, however, the information from Life Extension (where I purchase most of my supplements) says to use it not more than 4 times a week and not to use it on an ongoing basis—and this is for their 50 mcg tablets.
Reading on another forum, people were using it at a dosage of 200 to 400 mcg daily. So I am concerned about the safety. I want to do anything I can that would be helpful, but, on the other hand, I don’t want to do anything harmful.
My husband has been on Aricept for 7 years, and as Dr. Rosenfeld stated on a TV program, “It probably doesn’t do any good, but I prescribe it because it’s the only thing we have.” Since studies seem to show that it is probably not helpful after this much time, I would like to discontinue it. The $1900 a year cost is also a factor. As I understand it, the action in the brain of Aricept and Huperzine A are similar. Could you give me some help on this?
Lori, huperzine A and aricept are both cholinesterase inhibitors, so the basic function is the same. They do have somewhat different biological activity profiles, however. And huperzine A is clearly much more powerful, since the effective dose is so much lower.
You would not want to give huperzine A to a healthy person on a regular basis, any more than you would want to give a healthy person Aricept. But a patient whose brain is having problems with the cholinergic system, these meds can be very helpful.
There has been a very large scale, two-and-a-half year, clinical trial on huperzine A, which finished up just a few months ago. For the first six months, participants were given either placebo, 200mcg twice a day, or 400mcg twice a day. After that, the trial went into an open-label stage, in which all participants received the med for two years. My husband was on the lower dose (200mcg twice a day), for the entire time.
Huperzine A was found to be very well-tolerated, and safe, at the higher dose. That was also the only dose that was shown to be effective during the first six months of the trial. The lower dose showed a trend toward efficacy, but it wasn't statistically significant. (I haven't been able to find the results from the entire 2.5 years published anywhere yet.) My husband very clearly benefited from the med. I'm keeping him at the lower dose until he starts to slide, and will then increase it to 400mcg 2x day.
And yes, at $10 per month, there would be quite a cost savings!
(I wouldn't necessarily agree with Dr Rosenfield, however. Recent studies have confirmed that Aricept -- and Namenda -- can continue to work for many years. On average, that is. And many caregivers have decided a med isn't doing any good any more and have taken their LOs off, only to have them go into a very steep decline. So I think that switching to huperzine A would definitely be better than discontinuing meds entirely.)
... hey! You're new here! Hi, Lori, and welcome to Spouse!
Joan would normally pop by to welcome you personally, but she's on travel and also having computer problems. So I'll do a little fill-in for her, and she can do the rest when she gets back.
Be sure to check the home page -- www.thealzheimerspouse.com. It's full of interesting info -- I find something new every time I browse there. For example, in the menu on the left side, there are many topics filled with information. Joan always suggests that newcomers to the site read "Newly Diagnosed/New to this website" first, and then check out "Understanding the Dementia Experience". That's an article written by Jennifer Ghent-Fuller, and an excellent description of what is going on in our spouses' minds, and what we can do to help them feel safe and loved. When you get a chance, scroll through the "previous blogs". Joan starts her own "threads" as blogs, and they often end up being discussed on the message boards. I'm sure you'll find many topics you can relate to.
Joan started her own store recently, at our request. There's a link in the menu, and another in the center of the page. The store has some really neat items, specially designed for us; and if you like, you can even design your own. Also, if you ever need to shop on amazon.com, come here to link into their site, and Joan will get a teeny commission from your purchase. (She has done everything -- set up this site and run it, set up the caregiver cruises, lobby Congress -- without any compensation. We need to make sure she finds some source of income so this site will stay here for us!)
Information on the home page itself is updated frequently with new blogs, news and/or information updates, so many of us check there every day.
You can search for topics of interest on the message boards, using the "search" button at the top of the page. Enter a key word that might be found in the title of the thread (click on the "topic" button) or in the posts (click on "comments") Note: this particular site will pull up any comments that have the key word anywhere in the post, even if it's part of a longer word, so you can enter, for example, "myoclon" and pull up posts that mention myoclonus and myoclonic jerks.
You can start a new thread by clicking on the "start a new discussion" link in the upper left-hand corner.
There are also three fun threads where we hope you'll post -- "What are the Age Groups?", "Ages of the Caregivers", and "Where are you from?"
Another great thread you'll want to be sure to read is "Caregiver Tips - Things I wish someone had told me back in Stage 2-3."
The people here are wonderful. Let us know what we can do to help you.
Hi, Lori. Glad you found this great site. I know you will glean very useful information from all the friends here. Definitely check out Caregiver Tips. I'd love to print them all and refer to them regularly.
Sunshyne-thanks so much for the trial info. I will be looking up some trials locally and discussing all with the neuro.
Welcome to my website, and thank you to Sunshyne. She said it all, but I did want to extend a personal welcome. I will be popping in intermintently during this week, as I left my warm Florida sunshine to spend Thanksgiving with my sister in Chicago, where I am freezing my tootsies off.