I consider all of you the experts on AD as opposed to the experts with the medical degrees. I realize that the progression of AD varies in each individual. However, I'm just wondering what the average length of time is for the early stages. My DH was diagnosed in summer 2010, but I began to see signs in 2008. So we're going on four years and I think the decline has been slow. Many times I just see more of the same. My DH is considered high functioning, so that might be why he doesn't seem as bad as what many of you describe. Of course, he no longer works and doesn't seem to care and has no clue how we're even surviving (SS and private disability). All of this from a man who had his own business for 22 years. Any info you can share is appreciated.
In the same 4 years my DW has gone from being almost normal to the final stages. She has no other medical issues other than her brain is not able to control her body.
elaine there is no real timeline but i think more depends on the TYPE of dementia they tend to have. FTD as some here have seen is called the AD on steroids and seems to move rather quickly in terms compared to other forms so the stages move more quickly.those that are high functioning seem to stabilize longer before they enter new stages it seems. my DH diagnosed with vascular dementia&AD combo has had several years in each stage and more in mid stream. it melded from first stages to early mid stage without much notice. then in our case plateaued for several years. then mid stage to end stages came at a faster clip and much more noticeable losses, but i tend to think the end stage is also plateauing once again. you may not notice alot of changes until its more pronounced. others will have more input. divvi
My H's journey may not be helpful, but here it is: (Not only I, but his docs are confused and not of the same opinion), so if you don't want to read anymore about this -just stop here, because it is crazy.
Until 1999 everything was fine. H was in his 40's and had acheived 2 advanced degrees. Then he made a bad career choice which I dismissed because I've done the same thing, and I know many who have.
Until 2004 the normal prevailed. Then, in that year he did something that was just crazy. Again, a plateau, then in 2006, a dx of MCI. Then in 2009, a dx of FTD. Over the years that has changed to a dx of cerebral atrophy, then back to FTD and now mixed dementia.
Not yet 55, he has ssdi and a pension as well.
Never did he consider ending his career even in his 60's. He loved not only working, but being part of the community and the causes he believed (believes) in. Can you hear me screaming?
It helps to remember the memory specialists' motto: If you've seen one Alzheimer patient, you've seen ONE Alzheimer patient. Every person is affected by, and the disease affects every person, differently. It's the nature of the beast.
Elaine--go to the Fisher Center for Alzheimer's Research Foundation site and look up Stages of Alzheimer's. (It lists the mean length of time for the stages.)
Also, you can do is talk to your husband's doctor about it. I found that as the disease progressed, my husband's neuro could get an idea of the rate of progression and was then able to do some estimates for the future. Another good reason for dealing with a specialist who is well versed in the disease.
Elaine, my hubs was diagnosed Oct 2010, but I can assure you that in the summer of 2010 I knew something was drastically wrong! And I too can see signs back to late 2007 and 2008.....my hubs is just 47. He is early stages, but somedays I think he is more moderate, and I do see a decline if I look back at last year this time we were all on a ski trip in Vermont. I don't think he could do that this year....he skied a lot on that trip, I really think it would be hard for him now. I also think hubs has no other health issues, he was an active, fit, healthy guy up until Alz hit....so I think that has some effect on their decline. But yes Joan is correct in say if you have seen One alz patient you have seen One. They are all SO different!
Elaine K My DW was just under 7 years from diagnosis to the end. She started with minor memory loss for the first 3 years with just slow decline. The last year was a very rapid decent and she was gone. She was on the normal meds for the illness and there is no way of knowing whether they helped or not only God has that answer. The main thing to remember and accept is that you as the caregiver done everything that God gave you the tools to do. Please believe me when I say the He will give you the strength, wisdom, and patience to deal with everything this disease throws at you. Prayers are the best treatment option for you. Remember that the final outcome will always be same. So don't second guess yourself about whether you done all you could just know that when all is said and done your spouse is in a better place and without more suffering. May God bless your journey thru this very difficult time. Bruce D *
Thanks everyone for your input. I'm the type of person who likes to try to stay ahead of trouble (of course, I guess we're all like that) and it's just so darn hard to know what tomorrow will bring with this confounding disease. I'm so very fortunate since my DH can still do so much for himself. No issues with personal care yet, except for nail trimming and hair cuts -- I can tell his perception of what is appropriate is gone.
Sometimes strange things happen where he gets really confused and I think he's going to really decline and then it passes and he's back to "normal" (the new normal, that is). I guess I'm really afraid of the later stages and try not to think about it.
I do go to individual counseling, plus a support group and I have friends who have been very supportive in listening to me. But as we all know, in the end, it's just us trying to go about our lives as best we can with this dreaded disease always looming in the background.
We have been into this terrible disease for a good 20 years.Like others have said if you have seen one person with alzheimers you've seen one person with alzheimers.Some days I think I won't make it through this.Other GOOD days I think I can do anything.
Elaine - from what I hear, true EOAD goes quickly. My FIL was showing signs in 1985 and died in 2010. My SIL was diagnosed in 2005 but showing signs a couple years earlier. We always called her a ditzy blonde and wrote it off as that. Plus, her husband suddenly died in 1998 of which she never got over, then their mom suddenly in 2001. I contributed it to depression which could have factored into the early onset - we just don't know. She has been progressing fast compared to their dad. My husband showed signs in 2003, was diagnosed in 2008 (age 59) but is still high functioning in many areas. He works hard to remember, which he will surprise me and do, but his short term memory is his biggest loss. He went down to 20 on the MMSE but as we all know, that doesn't necessarily mean a whole lot.
Because to me he is going slow I fear this will be a long road like his dad. I wonder if his sister (diagnosed at 55) didn't decline so fast because she went to day care at Easter Seals but lived by herself with her daughter calling her morning and nights to make sure she took her meds. We will never know. I do know I dread a long haul like my FIL had.
ElaineK, DH was dxd in 2008 with "pre-senile dementia" with no explanation of what that meant to either of us and our future lives. He plateaued for 2.5 years at early-mid stage 5 and now is in mid-late stage 6 in just 1.5 years. The stages at teh Fisher Center for Alzheimers Research outlines functionality (or loss of) by the stages. DH has always had some in the stage I think he's in and then a few in the next stage. He was dxd with FTD by Dr. Reisberg who documented the stages in the Fischer Center material.
My story is very much like Samismom22.. my hubs was diagnosed Nov 2010, but I can look back now to before that and I knew something was drastically wrong...daughter picked up on it before i did! I too can see signs back to late 2007 and early 2008, when DH fell off the roof, had bleeding on the brain and lost short term memory...but which in turn I think triggered AD off quicker......my hubs is 72. Dont really know what type of AD or what stage he is at...some days he seems he is early stages, but somedays I think he is more than just moderate, the last few months he has declined a lot... DH has no other health issues, he was an active, fit, healthy up until Alz hit..now has no interest in anything, He says he hates his life now, so he must know he is not well, but won't have the Ad, Dx.
Elaine K ... you are already doing some very smart things as an AD spouse, like coming to this site and joining a good support group. My situation is similar to some of those noted above. My wife and I are now both 65; she was diagnosed at age 63 but I first noted symptoms when she was 60 and started keeping a log. I'd show my logs to doctors, but they basically ignored what I was seeing and they misdiagnosed and treated my wife for stress, then anxiety, and then depression. We eventually went for a second opinion and she was diagnosed with AD. Her pattern used to be relatively stable, then q 'fall off a cliff' in one or more areas, then stability on a plateau for several more months, then another fall off a cliff, etc. Now, however, she is at moderate stage AD and her pattern has changed to one of slow but continuous decline, sort of like sliding slowly down a mountain. People she sees occasionally would never be able to notice the slow decline ... but I see it regularly. Things like forgetting where things are in our house that we've lived in for 39 years. Each week, she forgets more ... and more ... and more. I've continued to maintain logs, making several entries every week and anyone who reads my logs can see the slow but steady decline. The logs used to be for me to show to doctors. Now, the logs are mainly for me to vent my own stress ... and also to be able to verify just how much our 'new normal' keeps changing. Good luck with your particular journey. As Joan noted, each AD journey is different.
I can chime in here with my story LO was diagnosed 4 years ago,two years ago admitted to ALF,escaped twice over an 8' fence while attendants stood an watched, after spending a week in mental ward of hospital to get her meds "straigthened out"she was then admitted to another ALF that was secure 70 miles away,for a year an ahalf she was ok but the last few months she's going downhill very fast the director called friday an wanted to know if we'd like to move her closer as she's fading quickly,said she's never seen anyone go downhill so fast,as of about a month ago she couldn't raise her head off her chest an now she can't or won't eat,this makes for a very long ride home,seeing her like she is it will be a blessing for her when she passes.
ol don, my heart breaks for you. We don’t want them to leave us, but when they are in the last stages, they have no quality of life. When she passes you know she will be whole again. An Angel watching over you! (((HUGS)))!
Thanks all,this isn't a fun journey we're all on but we all have to make the trip,some its a longer ride than others,I hate to think of shorter one as good because we lose our LO but at least their released from this terrible ,God bless all of you,noone except you know what your going thru
old don sorry to hear your DW isnt doing so well. we all pray for release earlier than later if things start deteriorating quickly for them. i know its a terrible ride home with all that time to think. :( divvi
Ol' don, I'm sorry your wife's condition is deteriorating so quickly. It's tough to watch it happen and not be able to do anything but be there. You are both in my prayers. Lots of love.
Abby, just use your caps if you want to scream, honey! Ol Don, my prayers are with you. You are so right. The decline is so horrible that the passing will be a blessing. I hope you will be flooded with memories of good times then. My husband is still here, but I made a photo album entirely of pics of him and when I am down, I look at it and drift back to better times.