OK, it is my turn to vent. I asked the neurologist's office for my husband's life expectancy. An advice nurse called me back today. She said 10 to 15 years after diagnosis for Alzheimer's patients. I reminded her that he isn't an Alzheimer's patient. He has Vascular Dementia. She said same thing.
Now let's be honest. I'm more educated about this disease than most caregivers. I've worked at educating myself. I know which stages he is in. There is no way that he is going to be in Stage 6 and 7 for 10 to 15 years. Even at the worst case. Am I depressed over this? You better believe it. I'm sure thay gave me long numbers because they were afraid to tell me the truth. But this scares the living daylights out of me.
I'm going to turn this over to my therapist on Thursday. I get the feeling that I need to ask the cardiology group the same question, or his family doctor. But I'm not sure that anyone has the whole story. Maybe the family doctor does. Maybe she knows, because I don't have a clue.
I have been on line. There is a study which says that from onset of Vascular Dementia to death the average life expectancy is 6.9 years. I know the date of the Event that gave him the disease. It was about 4.5 years ago. And those were the kinds of figures I was expecting to hear.
Starling, I agree that the numbers are all over the lot - it would be nice to be able to plan a bit better. My DH is in stage 7 and in a facility. The workers (not doctors) have told me to figure 1-2 years. Based on what I am seeing, that is probably closer than some of the other "educated guesses". There are so many factors that go into figuring out life expectancy that it is difficult to predict.
There is a calculator that you can look at - don't know how accurate it really is but it is a start: http://www.cumc.columbia.edu/dept/sergievsky/predictor.html
Starling, you are right. You know more about your husband's condition better than the advice nurse. She was quoting generalities, and I'm sure that she didn't want to say anything else but generalities. You were expecting to hear 2-3 years. That is what I am also expecting. I hope we are correct.
I'm hoping that my DH passes without reaching stage 7 for his sake, because it is so bad for them. We're not going to get a true answer on how long the life expectancy will be because no one can say with any accuracy. With the other diseases that our spouses have, they may go sooner. Then again, they may level off and we'll have more years ahead to have to go through this. My DH's first symptoms, looking back, were several years ago, even though he was diagnosed less than 2 years ago, because I had a problem with his doctor having him tested. He is getting weaker, has bad aphysia, and I don't see how he can last more than 2 or 3 more years. I'll ask my DH's neurologist on our next visit and see what she says and let you know.
Therrja, I went to the calculator and according to it, I'll need to place him in a NH in one year, and he might live for 5 years from now - that would be 4 years in a NH.
I haven't actually used the calculator yet, but have bookmarked it. I'll be going back and doing an in depth check.
I notice that it is based on Alzheimer's where there are no known vascular problems. Boy does my husband have known vascular problems. But even so, from what Mary said, it looks a lot more honest to me than what I have now.
Very interesting. If I had made a wild guess regarding my DH prior to filling out that form my guess would have been very much like the prediction given.
I wonder how to factor in such things as an ICD implant...energizer bunny thing..My DH had his replaced recently..he is doing okay for now although I defintely hexed myself the other day by saying no blow ups for a while. VIOLA! Today the glue came undone again. He mentioned that he guesses he is going downhill in a hurry which I don't think is all true.
I do know that my husband has now lived 8 years from date of diagnosis and unless he has a physical condition to complicate things I feel he could well live another 7 years or more. He is now in stage 7. I have read that even the end stage can last from one to 3 years.
It is depressing. My husband has been diagnosed with both vascular and Alzheimer Dementia. I have also been told that it makes no difference, been told by the Neuro.
Jane - If you DH is in stage 7 and youread that can last from 1-3 years why are you thinking he could well live another 7 years? Frankly, if my DH lives 7 years in Stage 7 I will be deceased and he will have to find someone else to marry him...
I have been praying (not in the traditional sense) that my husband does get a brain tumor as is expected, rather than have him go through all that is expected with dementia. Although he would be unaware, it seems so dehumanizing. He has lived a longer life span that most people with his type of cancer, I think he way out of the norm. I would rather see him go through the average 1 month life span after the brain tumor hits, than to imagine him unable to talk, think, communicate. Where is the quality of life in that?
I think the biggest problem with determining life expectancy in dementia is the inability to determine when the disease begins, so we have no accurate reference of how long it lasts. (Excluding an identifiable event) Plus, medicine has lengthened live spans. We can eliminate, resolve or at least manage a lot of disease/accidents that probably killed people before the dementia did. Just like we often find the existing tests are more accurate in later stages or for less educated people, the current statistics are more likely to include a generation of people with more health problems than just the dementia. My uncle survived a heart attack at age 30. With good medical healthcare, he survived and lived till age 55. Long enough to get the pancreatic cancer that killed him. If healthcare had been different, would he have survived the heart attack? Lived long enough to develop the cancer? Who knows.
Many years ago, my DH and I bought private disability insurance. We had seen some studies that indicated that due to medical advances, people were more likely to survive severe illness and accidents than before, but that didn’t mean they were in “perfect” health. The opposite was true. That accident that would have killed a person a decade or so ago now is survivable, but the person may be greatly impaired physically or mentally.
Perhaps as technology and science advances further, we will be able to accurately diagnose the type of dementia, whether it exists alone or with multiple causes, and when it starts. Then maybe a more consistent time frame will be available.
PatB Starling was saying from Diagnosis, not from the very beginning of the disease process.
Fran, I think the 1-3 year time frame is the end stage is not stage 7 but the very end stage. I am certainly no expert at all in this but I am going from how my husband is. Yes, he is in stage 7 but the stages can last and last and last. He is not yet in the end stage. I really do think that if his health stays perfect as it is now he could well live 7 more years. The Alzheimer could last that much longer, the only thing that could take him sooner is a physical conditon not due to the Alzheimer.
Jane, With AD, who knows at what point in the disease process the diagnosis is? Some people go through years of testing and/or doctors to get a diagnosis, some have a cooperative LO, or educated doctor or research center and get a diagnosis sooner. I think in many cases the diagnosis is an artificial starting point, although most time frames use it as a start time. PatB
In my husband's case I know exactly when the event happened. It was December 18, 2003. His heart slowed down and he passed out while driving on Route 405 in Southern California. He totaled the car by ending up in a ditch. I can't say he drove into the ditch because no one was at the wheel at the time. He was unconscious. There was a head injury (probably minor), 6 broken ribs. In Emergency his heart failed and he died. He died at least twice more that day. He was given a temporary pacemaker and a permanent one that same day.
Now, it is possible that there was a previous event as well on January 4,1992 when he had 6 bypasses. But if that counts the damage was so minor that no one noticed it. Looking back now I can see some weirdness, but that is only because I'm educated and looking for it.
He was diagnosed a year ago. He is now 70. In 15 years he will be 85. If nothing else the battery on that pacemaker will give out in a lot less than 15 years. He also has high blood pressure, type II diabetes and high cholesterol. Even without the dementia he can't possibly have 15 more years. I'm younger than he is and I doubt if I have 15 more years.
What makes me mad is that I asked and they lied to me.
A dear friend of mine, my mother's age, had a pacemaker. When she was deep into alzheimer's, and the pacemaker was due to be replaced, her family just didn't replace it. She died peacefully a year or so later.
MissB, if you scan down they explain all of the test term examples. They are taking it for granted that this is an otherwise physically healthy person with no cardio or vascular problems. Even with that, the estimate I got was a lot shorter than what I was given by the advice nurse today.
briegull, I have already made that decision. In his case I'm pretty sure it will be a battery, but in either case he can't handle any kind of surgery and survive it.
Thanks Therrja....that was an interesting little exercise--the life expectancy calculator. Not that I particularly believe it. This is not to say that it isn't believable...just that (even though--or maybe BECAUSE I find this early-ish stage of AD so emotionally confusing) I more expect him to go on and on and on like this forever. Somehow I just don't believe it's going to change.
The calculator guessed he's within just over 4 years until NH-level care needs, and just over 6 years of life expectancy (both numbers are the 75% level.)
I still don't believe it. Not that I really believe something else instead. I just don't believe it.
I guess the problem is this: It's strongly my personality to WANT TO KNOW how things are going to go down. I want a timeline. I know I don't get one. Therefore, because of my strong need to feel like things are somehow "squared away", I have to find a way to feel squared away even if I have a husband who goes on exactly the way he is, forever and ever.
Thanks Starling...............I feel really stupid for that one.......I was concentrating on the written report and didn't see the term. The calculations I got were also alot shorter than what I was led to understand but I'm glad to have the estimate-it helps with my reality check (so to speak).
My previous spouse had multiple myeloma - a cancer with no cure, but some things to do to prolong survival. At the beginning I asked how much of a certain marker he could have in his blood, which I wrote down. Then, I was able to track that and no matter what I was told (oncologists sometimes think they are god) I could track that. Sure enough, when that tracker got to the amount no one could take, he died. I actually felt a relief KNOWING. It doesn't seem like there is going to be that KNOWING this time - so I just take each day for what it is. I know living doesn't last forever and all I hope for is some sort of peaceful end to it all...
Jane - so,here's my question. How do you feel about 6.5 years? You have seem so exhausted - are you up to that? I love my husband dearly, but I can't imagine going on for 6.5 more years...
I'm sure I had the correct information and I'm a bit surprised at their calculations. Like Miss B said, it helps with the reality check. They say the earliest NH is 18 months and the earliest death in 23 months. That's not very long, is it. There is a lot left to do.
Got to thinking today--I'm not really a wife any more. But I'm not a widow either. So, I'm wondering: "What am I?" If I say that to any of my family or any of my friends/acquintences, they will have me locked up or put on anti-depressants. I don't think I'm clinically depressed. I'm sad. I sure am not very happy about this but I am pretty realistic. I think I'm suffering from anticipatory grief. I know I've gone through some of the grief stages but I wasn't sure what it really was. I thought I was just being unreasonable. Can you believe that? I'd like to know just how I'm suppose to be reacting and how to act.
My throat hurts so bad from trying to swallow the lump. I wish it would go away!
Fran, like you, I don't want to imagine or go through 6.5 more years. Jane, hopefully the timeline is wrong. Remember, even if they are healthy, AD slowly shuts the body down and the rate of decline is different for every patient.
No, I could not go through this another two years much less 6 but I may have to, there is no choice, look what Sandi went through 3 years of total fetal position at home, this is the most horrible disease in the world. And what do you say, not a Widow and not a wife, I tell people I am a married widow. I wish I had know two years ago what I know now, when my husband had double pneumonia and the Doctor said "Now we need to decide how agressive we want to be" I would have said just keep him comfortable but we somehow get tricked into thinking that it won't get worse, it will stay the same, I think that is because the stages CAN stay the same for so long it is misleading while all the time it is really slowely progressing. As I think back I believe President Regan lived 10 or 11 years after diagnosis. I remember the Doctor telling us when we were first diagnosed that it could be YEARS. and he was correct.
My husband is the picture of health, all vital signs are like that of a healthy 30 year old. He will outlive me.
fran, you mentioned in the above post you don't quite know what I am saying when I say stage 7 but not end stage. I mean that stage 7 has sub stages, a,b,c,d,e,f. my husband has been in sub stage 7 a b for two years, he still has sub stage c,d,e,f to go, f being the end stage. Stage 7 is not end stage. End stage is 7 sub stage f and can last 1-3 years.
So yes, in reality he can last another 7 years. I posted e-mails to a lady I met on one of the Alzheimer sites and her husband had the disease from diagnosis for 16 years, when we stopped posting he had not yet died and was not yet bedridden. It is all almost overwhelming when you really start talking about how long it can last, and very depressing when you look back over your life at how long it has already lasted and how much of your own life it has taken away.
About the only way I am surviving right now is letting go. I know that sounds hard to say but it does not mean that I love him in less, in fact I guess I love him more than I ever have, it is just that I have finally learned that my husband is gone and I am living without him whether I like it or not so I might as well act like it. I am trying to do things as though I am alone. It is not easy but it is called survival.
Jane - Thanks for all of your information - as horrible as it is to consider. Does your DH have any other problems besides AD? I remember how you were trying to get some time off and the Hospice experience was so awful for you. Do you have other plans for your survival? I feel so much love and concern for your long path. Thank you for all your knowledge.
Frand, No my husband has no health problems, he has vital signs healthy as a 30 year old. My plans are just to take one day at a time, otherwise I could not survive this. I do have help that comes in so I can get out and do errands and such but mostly I will have to do as I said, let go, love him, and go on living as though I am already alone. As I said before A married widow, lets me just realize that I now am on a journey for the rest of my life ALONE and that is what is so scary. I have been married to my husband since I was 17 years old, he is all I know.
Jane and Frand ... I have been reading your exchanges and feel very close to each of you. Such a sad thread today. Jane my husband is no where near where yours is in the journey and yet there are similarities. He is as healthy as they come ... no other conditions.In the last couple of years he seems to have less and less worries , and now is much like a big five year old.. pleased by having his favorite treats or tV shows. In the same few years I have drastically changed my social life , activities..well you know the drill. I literally can not let myself think about the future. And this thread has made me do so.I hear such exhaustion in your words and feel that I will be living them in the future. This is truly a horrible disease.. Pre AD my DH used to say that he wanted to die quickly. No lingering disease for him. He used to say that he would shoot himself rather than go to a NH. How cruel that it is likely he will live years in a twilight zone and most likely end up in a care facility. Some days are harder to face then others and this is one of them
Reading all the comments surely gives me pause right now. I don't know how many others have husbands with FTD, but the more I read about it the more nauseous I become. My DH also said what Anita41 's said, so I just had my son get our last gun out of the house. Who would ever have thought that necessary? I am getting the mini mental figures from our Doc to check out the formula...interesting thing that...wonder how accurate? it is getting more difficult to have private time on the phone or computer...I feel like Big Brother is always watching. It is 3:00 AM now, and about the only time I can do this. Oh well.
It's probably very accurate. But it still doesn't tell you much. In other words...it may hit right on the mark to say that of all the AD patients with parameters A,B,C,&D, 25% will die within x years, 50% within y years, and 75% within z years. Still, you don't know if you're x, y, or z...OR q...that is, the 25% which aren't accounted for because it's built into the calculator that 1/4th will not meet these norms.
Thanks Starling for the info. i will try this later, but after reading the comments it certainly is a depressing subject. we would certainly not even think of this if our spouses didnt have AD but with this reality the uncertainty of how long one must remain in this limbo disease is gutwrenching. I agree with Janes theory of the sub units in stage 7. i think my Dh has entered stage 7 a/b and i can say he lasted quite a few yrs say 5yr in mid stage 5ishearly 6. i am calculating the VD/AD dx from '99. that makes it 9yrs for us as second tests in 2000 confirmed. he is still quite ambulatory and talks but alot of jibberish. overall to be 9ish yrs in to this disease he's holding his own. BUT, i have plans in my mind that if things get rough, and he loses the walking/talking he has now and should become bed bound,, i will consider hospice and not treat his cronic UTIs which is his main source of concerns. also BP is another. he has those two outlets if we should dare to call it that. nature would take its course. i refuse to have him linger in limbo if it gets to that late 7 point. with VD there is also the degree of stroke in the picture. those of you with no other negative factors facing your lovedone are facing harder challenges i think. god bless us all and give us the strength to endure whatever is dealt. divvi
I did the calculator again this morning and for my DH at 75% he has a little over 2 years before NH and at 75% has less then 4 years until death. This is what I thought all along even though many of your spouses are much worse then my DH seems at this time. Since he is 61 and has EOAD it seems to be true that the this AD progresses much faster. Also, this doesn't take into consideration he has major heart problems and lung problems. I am going to go back and do the calculator again and put in a different age just to see what happens.
Jane - Can you explain this? First, I checked the life expectancy for a male, age 83 and it is 6 years. Then, I went to the cumc site and answered the questions. According to that my DH has a life expectancy of 6.69 years - more than the average 83 year old! Of course only 9 to 18 months of that before needing a NH. That just doesn't seem right to me...
Frand...it probably just means if he doesn't wear out of old age first. The 6.69 years would represent the "usual" progression of the AD for someone with his characteristics.
OMG ! I just checked this for my husband and it is 1-2 before NH and 3-4.6 before death. How can that be? Apparently mine and JudithKB's are about the same in many ways. Mine has heart problems and severe sleep apnea. Now I am back to depressed and grieving. . . .
Play around with it. I don't think it is reliable. I tried diagnosis, 3 years ago, 4 years ago, age, (real 55) then 65, then 66. All of them returned with the expectancy 75% of a nursing home at 24.6 months & life expectancy between 4 - 4 1/2 years. Now, from what I've read on the postings, most everyone has been way longer in limbo in the various stages, and I just don't think this is a good accuracy expectation to what everyone is facing. I know it is different for each individual, but I think they cut the time way too short.
If anyone has the same experience with playing around with the numbers, please post. Wouldn't want anyone to get false expectations.
Whew, Val, thanks for your comments! My DH is out working in the yard. This chart shows him in a nursing home in 2.5 yrs and death in 3 yrs. 8 months. Surely this is not right. I'm going back to play with the numbers.
When I played around with various numbers, etc. I found the major factor in determining a short time to NH and death was the EPS. I really don't completely understand exactly what the EPS factor is. Can someone explain in simple terms for me. The only thing my DH has (if I am understanding the EPS correctly) is tremor or twitching of his right hand from time to time. I think the short time for my DH and Gretchen is because of Early Onset
Val I think according to the calculator your DH would also be considered Early Onset like Gretchen and my husband. That is why you are getting the short time left. Anytime with AD before the age of 65 is Early Onset. So even if you put 66 for age and 3 years into AD it would be considered Early Onset. Dazed how old is your DH??
My DH slso works in the yard and plays golf but he is going down hill fast. I don't think he will be able to do these things 6 mos. from now.
My DH is 74. I put down the time he's had Alzheimer's was 4 years because thinking back, that's when I first noticed symptoms. He was actually diagnosed only this year.
Mine still has long term memory pretty good, but short term is totally shot. He walks with the stoop and much slower than just a year or two ago.He reminds me of someone in their 90's walking. It has been 3 years now that I took all the bank accounts away from him. I realized that he was not able to handle money. Took the credit cards and cash shortly after. He gets terribly confused when given any oral instructions to do anything. That includes small repairs that he used to do all the time around the house. He has also lost judgment regarding safe situations for himself or anyone else.
He will get into the shower just fine. Not sure that he is bathing as well as he should. Towel looks pretty bad when he dries off. But I have to open the door and take his arm to get him to come out. I have waited to see and he has stood there for at least a half hour until I took him out. Also haven't let him drive for almost 2 years now. He can't start the riding lawn mower without flooding it or ruining the starter. I'm also again concerned that he would run over things he shouldn't. So I don't let him do that anymore. All initiative is gone. He might help to a small degree if doing something along side me, but basically noting on his own. With the exception of something that should not be done at all !! He just turned 63. So I would say this absolutely started around 60. It has been several years since he has played golf.
Recently I was looking for activities for him during the day. I somewhat jokingly mentioned coloring books and he said that he would like that. So we got some !He also likes those children activities books.
Odd how almost all of this sounded explainable, up until recently. Now I know that we are on a downhill, slippery slope. But those numbers sure threw me for a loop earlier when I looked at the chart.
Sorry Gretchen that you were thrown for a loop. Another thing my DH has going against him is his father died from a massive heart attack at the age of 47 and his mother died in her late 50s early 60s of cancer. My DH is also being evaluated for a pace maker and we probably will know next month if he is going to have to have one. My DH has been evaluated as moderate to severe.
Judith, think really carefully about that pacemaker. Investigate what a major surgery would do to him. Investigate if you really want him being kept alive in his present condition, or worse condition.
You may end up saying yes. You may end up saying no. I've decided that when my husband's pacemaker fails, I can't see my way clear to having it replaced. A pacemaker is so common these days we forget that it is actually a heroic effort to keep someone alive.
By the way, it is OK if you choose to make a different decision than the one I seem to be making.
Again, I will mention quality of life. Put yourself in your spouse's position. Would you honestly want a pacemaker if you knew all that was ahead for you. I doubt it. I don't mean to sway you, just to put the question in your head. Most of us would want a swift and merciful death. I know I certainly would.
Well from reading, I see there are a few of you with spouses with EOAD. My husband is 54, we were officially diagonised last October. I suspect this was going one at least a year if not earlier than the offical diagnoisis. In the past 2 months I've seen drastic and I mean drastic changes. So much so that I called our AD Clinic and requested he be seen earlier (they test him once a year), I was able to get him in this Friday. He cannot operate the remote control on the TV, he puts water in the coffee maker, but forgets the coffee, he can hardly get words out to make any kind of conversation, I could go on and on. I did the caculator thing and cried. According to the caculator he'll be gone within the next 4 years. Who am I to believe, when no one will give me even close to the same answer. I'm in the process of trying to figure out how I can stay home and care for him and still earn some kind of income, we cannot make it with out my earning. What a disaster.
I'm in the same boat without a paddle. How can I work, which I must & care for him? Impossible. I don't know the answer. I still doubt that calculator, but I will go back & play with it some more. Does he have other relatives that can care for him? I have tried to prepare my husband's brother, who has not squandered HIS inheritance, that something is very wrong, but he replies, "you have it better than most couples." He just doesn't get it, but he will be getting his brother at some point.