Just wondering. DH is in stage 5 pretty much. I know there are general statistics somewhere about length of stages and I also know that if you've seen one AD patient you've seen one, but I'd really like to hear how it went for those of you who have loved ones who have progressed out of stage 5 into 6 and beyond. Stage 6 will be such a dramatic change in our lives.
So my question is how long was your LO in stage 4 and 5 before entering stage 6?
terry you are right about dementia victims all being different. My husband was at end stage of FTD for several years. It was terrible to watch but at least he was not aware of how bad things were.
My hb is still in stage 4 - I think they are in this stage usually when diagnosed. He has been here for 2+ years. I really do not like to think of how much longer it will be. I am one of those that want this over as soon as possible.
I think DH was in stage 3 when diagnosed Jan 2007 and progressed into stage 4 in 2008. This year he appears to be in stage 5.
What about others? Do those of you in stage 6 remember how long they were in stage 4? For some reason it seems stage 4 lasts quite a while in many cases but not even sure why I think that.
To me, the stages are a mystery. How can you really know what stage they're in when one day/one week/one month they seem to be in a late stage, so much so that it's truly scary, and then another day, month, etc. they seem so well that if we didn't know better most people would think there's nothing wrong with them. I have no idea what stage my DH is in and I don't think I even care. What difference does it really make? What purpose does it serve if we know? From what I read here and hear about from his doctors, one stage can last for a month and the final stage could last for years? I think we just have to live our lives the best we can. There really isn't anything we can do to either speed up the process or keep it from speeding up. It is what it is, isn't it?
My husband was dx in early 2007 but I was aware of the many changes in him for almost a year before and now as I look back there were things happening 2 years before dx. At the dx he probably was in stage 4....I think now he is in stage 5 going into stage 6 with a more rapid decline in the past six months. He is very functional regarding dressing, bathing, moving about, etc....but he doesn't seem to understand much and forgets everything. I can tell him to go to the bedroom and get something for me and he may or may not remember what it was he was told to do by the time he gets there. He sleeps a lot. He doesn't understand TV, but pretends he does. He seems not to want any interaction with strangers. I think that is because he is afraid he will say something stupid. If he is trying to tell someone something it had better be short because he will forget what he is talking about and sometimes he just makes up the ending. He was an expert with the computer and now he never goes on it. He has forgotten how to use it. I dread the next stage but I just want to get this over with too. He is very moody and depressed most of the time as well as mood swings.
Bev, I hear you, but I'm still curious. It would be of interest to me to know whether some people stay in stage 4 or 5 for a very long time. I'm curious to know how long others have stayed at a plateau. There are plans I know I should have made for later stages that I haven't as I bury my head in the sand thinking this may stay this way for years when I don't even know whether that has ever been the case with anyone.
Judith KB, you've described my DH perfectly, except for the past computer skills. I now realize that the warning signs were there long before I suspected dementia.
Judith KB, My husband also was an expert on the computer. Now he as problems and I have to get him started on his computer for him to read his mail. I figure that he is in stage 5. Twice this summer he turned the heat on when the air conditioning was to cold for him. He puts the garbage out to the curb, but takes it back in before the truck has come to take it. He can't find anything. He dresses himself, but I put his clothes out. He showers by himself when it tell him to and prepare everything for him. It has been a long journey, He was first diagnosed in 2005, but has problems for long before that.
Mimi--My experience has been that my DH has better days with less severe symptoms showing and days with many more advanced symptoms manifesting. The most Severe symptoms determine the Stage. So, while two days ago he had a good day with some stage 4 and 5 symptoms showing, he is showing early mid-Stage 6 symptoms last night and today and that is where he is. The symptoms of each stage don't replace the previous stage, they are added on, so our LOs don't swing between stages, they just exhibit them in varying degrees at different times.
DIVI: That's interesting and what I am curious about. DH is just entering stage 5 I think although I may be kidding myself since he seems better than he is sometimes and it's easy to live in denial.
Divi, During those five years your DH plateaued in stage 5 do you remember what it was like, what you were doing? Were those the years you all travelled a lot or was the travelling earlier?
JudithKB, my DH was diagnosed same time as yours and I can trace symptoms back to 2003 with everything becoming more obvious in 2006 although I wouldn't ever have guessed AD. We thought Thyroid at the time. Your DH does seem to be progressing more quickly than mine has. The first two years were a nightmare with all the typical confussion getting a DX entails and his personality sucked big time. He was angry and violent a couple times hitting me. His only goal seemed to be going out and having fun listening to music and drinking in the local bars here. (we are in tourist town so can walk to them) And then fairly suddenly he changed without any medication some require like Seroquel. He became easy to get along with, very amusing, and except for the nightly sundowning, fairly easy to get along with. I keep thinking I could live like this forever and not be miserable like I was in the beginning or like I might be when things progress. So, that's why I'm curious how long this could possibly last. After a couple trips in April he started declining fairly rapidly but now that seems to have leveled off a bit. Of course every day brings a surprise and I know this could end tomorrow, but there are some things I would do differently if I thought we could keep the status quo for at least a couple years.
Carosi, my husband's dementia is about the same way along the road as your husband's. The other thing I noticed is that the decline was slower in the first 3 years after diagnosis (and looking back, he showed clear signs for about 2 years before that). But this past 3 months, the pace of deterioration has accelerated markedly. He is 90-years-old, and so the whole body is showing signs of aging. I was away for 4 days on a holiday, and when I came back, I was struck by what I had got used to by seeing him every day. I would guess that when I go to the patient care conference in early September, they will classify his condition as Extended Care. His kids made a flurry of visits when I first moved him to the new facility and made a few minor problems for me, but it has all trickled down now to "Patient's children visit him infrequently."
I contribute my husbands more rapid decline in the past 6 months to the fact that we moved. He was terrible during and at least 3 months after we moved. He is now adjusted to the move but his memory/confusion, etc. have not improved and gone back to the prior date of moving, but have continued to decline. My husband is only 63 years and even though no one has dx him as EOAD (early onset) I just assume that is what he has and some seem to think they decline faster with EOAD. He has no physical signs of the condition yet that I can tell. My husband also has major physical problems, bad heart condition and bad lungs. He retired early with total disability because of these conditions and I would think the AD would have adverse affects on these physical conditions as well as the physical conditions having adverse affects on the AD. The neuro told me last year he thought my husband had 3 to 5 years to live but one never knows. This year the neuro told me to start looking for a placement that I would like because he felt I would need it within the next year or two. I said to myself....HOW CAN THE NEURO KNOW THIS???? CAN THEY TELL JUST FROM LOOKING????
I have always been the type of person that could handle most anything if I knew what was coming....I hate the unknown....and that is what is so frustrating to me now.
Judith - the heart and lung problems could be adding to or causing much of his problem. With sleep apnea they say dementia is common due to the lack of oxygen to the brain when they stop breathing causing damage to the brain. If you hb is not getting adequate oxygen due to his lungs and heart, this could account for the doctor trying to predict the downturn. Being prepared with a facility is a smart move. Many here have spoken of the stress of having to suddenly make a choice of placement without any preparation.
May sound cold, but I would think it a blessing if the heart and/or lungs gave out before the disease takes him.
Mary75--I know where of you speak. DH is ageing and decline is faster now, but he's only 67, so is still physically able in some ways. Sometimes very unstable and needs to use a walker, other times walking well. Sometimes his speech is very garbled other times clear. We had Hospice from Jan. into July, but the tightened guidelines necesitated them disenrolling him because his physical decline is not bad enough. Frustrating to me and to his Nurse and CNA. Stage 5 lasted fom Dx--8-9/2006 (just starting) until around March 2009, when Stage 6 started to appear in tiny increments. As I said we're approaching mid-Stage 6 now.
Terry, I tried everything I could to determine my husband's stage right after he was diagnosed and when I found this site 1 year after diagnosis. I soon discovered that there was no clear cut answer because they all progress at different rates and bounce back and forth. I eventually gave up trying to figure out the stages and try to take things one step at a time. He is now at end stage after only 3 years but from what I can understand, can stay there for a long time. I know you need to try to make plans but my best advice is the old "prepare for the worst but hope for the best". I know this isn't much help but it is the best I can do.
My husband was diagnosed July 2, 2008 and I estimated he was in stage 4. He was placed in assisted living December 21, 2009 and was stage 6. He is now 67.
I understand it's impossible to predict but this has been helpful to me. Mostly knowing that Divi's husband was in stage 5 for 5 years or so. I wasn't sure if anyone ever stayed in stage 4 or 5 for that long. It's complicated but if I thought there was a good chance DH might stay in this stage for at least a couple years I might make some plans I wouldn't otherwise. This has given me a lot to think about.
terry - my hb is 62, almost 63, and stage 4 but not a solid 4. Since his official diagnosis of AD in 2008, I sat and did nothing really because I thought it wouldn't be long he couldn't do anything and I didn't want to be on the road traveling when he couldn't. I wasted that time. Something was said on a thread here that got me to realize this in June. At that time I came "out of it" and now we are traveling our membership parks and going on with our plans. I am even looking for a Workamper job just for me - he will have to be content to sit home and collect his SSDI. I have no idea how long he will be able to travel - it depends on how he handles the changing every 2 weeks and such. Just like your hb, mine might stay like this for years or in 3 months he could be near the end.
We gave up a precious 2 years to stay and help my sister while her hb was dying. I now regret that because it was our dream we missed out on those two years and the way my sister has acted since he died, I feel it was a wrong choice. I can't change the past but I can the future. We will do what we can while we can. You need to also.
I think one reason it is so hard to estimate how long they stay in a Stage is that they all have different elements going on their life. Such as heart problems, previous psychiatric problems, diabetes, change in location, family dymanics and the old basic personality. It seems to be common knowledge that each time something traumatic happens they go downhill and recover some, but not to the previous level. My husband went from Stage 6 to to Stage 7 in three days because of illness I think the farther along they are, the faster illness can send them downhill. With vascular dementia they can cruise along at the same level for many years, but just have a heart or lung related event and they can go into a spiral very fast from which they never fully recover.
CHARLOTTE: Thank you for that. My head just isn't clear these days. I've wasted some time too and on the verge of wasting more. I hear you. I'm going to proceed as though he does have a few years in this stage.
John was diagnosed with dementia (most likely ALZ type) four years before I learned of it. His doctors didn't like putting "labels" on stages of the disease. So, I never heard of stages he progressed to. I CAN tell you that I learned of his diagnosis (I think) in 2005 (?). He passed in July, this year. Two years ago, I just remember his doc saying to me, "this time next year will be very different than today". I DO believe that he knew me and the children up until his death.
just getting back to this thread sorry. i think it depends alot on what type of dementia we are talking about too. FTD moves rather quickly sometimes. and my DH was dx vascular dementia and or combo AD. so depends on which variety they can have as to how fast/slow the disease moves. we had a very long time in stage 5 and lingered a while again into 6. then it has moved faster once stage 7 entered. we traveled well into stage 5 and early 6 then it got too much to move with him in airports etc. each is different and proceeds at varying degrees of decline. i was lucky i think the mid stage plateaued for so long. divvi
Judith, I think my dh is about the same stage as yours, except his mood is pretty stable and he is cooperative. Also he is increasingly incontinent in the daytime. I am thinking stage 6. Here in Holland the doctors never use the stages, but I find it helpful to be able to compare notes with others on these boards. When you are reading about certain behavior or problems it is helpful to know what stage the LO is in. ALso, the stages list gives a pretty good idea of what to expect next. It has been very good to be able to anticipate. For instance I had a supply of depends and special bedding on hand before it was necessary and didn'thave to scurry on the day that he came home from daycare with depends on and I decided to put him in them for good.
Terry for us it has been one stage a year, or even a little faster. DH is 67 and may have FTD in combination with AD.
Still, Terry. you are wise to seize the day and do everything you can as long as possible. We went to the US in May and I'm glad we did, although it was hard in some ways and dh didn't get much out of it. It is mostly the toileting difficulties that have now made me decide not to do any more air travel with him.
Judith, My DH is at a Stage 5 and his behavior sounds exactly like your DH's. My DH is 57 and the past 6 months he has been declining at a faster rate than previously. Starting to have a hard time making conversation or doing a majority of tasks, but can still bath/dress/toilet. I too, hate the "not knowing how long"... I am a planner!!
Terry--Generally, my husband is progressing slowly, was dx with MCI in 2005, AD in 2006, early stage till 2009, then into middle--stage 6 and continues there. It did seem to me like the progression was speeding up in 09, but his neuro explained that it wasn't the case--at that point DH was less able to compensate and cover up his deficiencies than he was earlier in the disease process.