My DH is 65 and dx in moderate stage. I know there is no timeline for AD. But I somehow feel a need to hear other experiences . It's so new to me and the uncertainty is very difficult to deal with. How do you do it? How did you do it?
Lorri: Have you been to the Fisher Foundation web page? I really like the way they describe the various stages and how long one is in the various stages. My dh was a text book case through the stages until he reached stage 6 and that went really fast and he died before stage 7. Also, the "Big Tree Murphy" is a good site also except it is a place that is not taken care of and somethings are missing. However, the lady wrote a book "Big Tree Murphy" and it is a wonderful book about AD.
Some people don't like knowing the stages, but I always found it helpful to know what to expect and I am the type of person if I know what I might be facing I can handle it better. I found that each stage has some good things and some bad things. Fortunately, the bad things go away about the time you think you can't handle that bad thing for another day...and the good things go away also...so try to focus on the good things.
Lorrie, it depends on several things. When my wife was diagnosed she 55 and was already what was termed as being of moderate severity. She was placed on Aricept, namenda, B-12 and folic acid that day. The medicines were able to hold symptoms to a very slow rate of advancement so her quality of life stayed at about the same level as when she was diagnosed with a very slow advancement. This made me think that she was doing good. The reality, as I later learned was that while the medicines slowed the advancement on the surface and helped her maintain a better quality of life the disease itself was continuing to advance underneath. When the medicines lost their ability to help then the symptoms, they took off like a rocket and caught up with the disease. It also would depend where in the moderate stage your loved one is plus Alzheimer's doesn't advance at the same rate of speed for all our loved ones.
I do agree with JudithKB* The Fisher Clinical Stages are about the best site I have seen. It divides each stage down into sub-stages and gives you a much better idea of what to expect. But only time and experience will really teach you in the long run.
I would strongly advise you to become active on this Web-site. While this web-site can not replace your loved ones doctors and other professionals that are doing all they can the people on here are able to provide some of the best ideas and advice you will get anywhere when it comes to assistance as a caregiver and it is available 24 hours a day 7 days a week.
Lorrie, I so understand the desire to cut through some of the uncertainty with solid information. Judith is right that the Fisher Center is a good place to start. If this link doesn't take you to exactly the right page, go to the main page and do a search for "clinical stages." http://www.alzinfo.org/clinical-stages-of-alzheimers
The info there has the feel of being compiled from several sources and is somewhat repetitive, but you'll get a better idea of how to place your husband on the timeline. For those of us who are always wanting to know "how long," there isn't a lot of help. Mine declined in a very slow way from '04 on (not diagnosed until '07,) but he remained what I'd call "moderate" in the sense that even though he could no longer work and had to stop driving, I could take him anywhere with me and expect good humor, cooperation, and reasonable mobility. He got tired earlier as time went on, but we didn't really hit a big cataclysmic change until the beginning of '12. Which was 5 years after Dx (but he should have been Dx'd sooner.)
Many sources say that the average life expectancy after Dx is 8 years. For most of the past 5 years I thought that seemed really speedy. Given his slow decline I didn't see how he would be close to departing within that time frame, but what so often happens with this gig is they DO hit a point where things just start to spiral downhill. I assume it has to do with how the creeping brain damage finally just crosses some small threshold beyond which function is just vastly more compromised than it was on the other side of that line, and problems compound...voila, you're in stage 6 and going downhill fast.
The problem for us "want to know" people is that there's no good way to predict when your LO is going to fall off one of those functional cliffs. Even then...we're left not knowing. Mine now lives in an ALF dementia unit, and there are people there who have seemed to remain in exactly the same condition as when I met them 9 months ago. Others suddenly spiral and die. It takes me by surprise. Mine continues to decline, but I can imagine him remaining as is for some time, needing to be fed, needing to be taken to the bathroom, sitting and dozing most of the rest of the time in his own little world. On the other hand--here is now my father who had Parkinson's died: He fell and hit his head twice, and could not recover. My husband falls all the time, and I recognize that this is also a great risk for him. So again--there is almost no point in this process where we feel like we have a sense of the timing. But at every point there is a certain probability that things will suddenly turn on a dime.
Lorrie: One other thing I forgot to mention in my earlier post. I read some place several years ago and can't remember where, those with EOAD (65 or younger) seem to go through the various stages faster and do not linger as long as those that are dx when older. My dh was dx in 1998 and died Aug. 2012 at the age of 65. He had some very strange behavior before 1998, but it wasn't a constant thing and would be forgotten before he did something else strange.
Most of his doctors and any professional that saw him told me he had a long way to go and wasn't any where near death as late as July 2012....I kept telling them he was not going to live to the the New Year....of course, they thought I was nuts...but, I didn't care what they thought, I knew my husband and what he was before AD and they didn't, therefore they could not see the decline like I did.
Also, a major factor is probably what other physical conditions the person has. My dh had a bad heart and COPD.
This is my experience. Spouse ( wife) was diagnosed at 51 and is now 56. DR say that she is in moderate stage. I do not see the EAOD conventional thought that there is fast decline.I, too, had the experience of early med regimin for about 2.5 years, but on no meds presently. significant weight loss over last 15 months. Good mobility. I walk with her 2-3 miles per day. Increase in # of hours sleeping.( Will sometimes have continuous sleeps in the 12-14 range, without much disturbance) i fear the loss of mobility. I am waiting for the " turn of the dime" / " the shoe to drop."
DH was in moderate stage 5 for about 2.5 years after dx at 58 and now in mid-late stage 6 at 62. Good mobility, continent, on meds for agitation/aggression, maintains his weight but has difficulty pronouncing words, memory shot.
We buried my dh's 89 yr. old sister last week. She was in end stage, couldn't talk, walk, feed herself, raise her head for the past 4 years. Every case is different.
My dh is good physically, continent, not aggressive but does take Paxil for agitation, 86 yrs. old and was dx about 3 yrs. ago. There is absolutely no memory, cannot carry on a conversation, knows his numbers, no comprehension as far as tv shows or reading. I find it very difficult to place him in any stage except I know he is not in end stage. Good appetite for sweets but hates meat.
Lorrie each case is so different. My guy was dx 2 years ago tomorrow, and he was driving and walking and just a bit confused. Now he can barely walk, incontinent, can't talk, cries, chokes and moans. I think this may be a faster than normal, from stage 4 to late 6 in two years.
I don't know if I am correct about how to judge the stage or the decline in your spouse, however in my dh's decline I found that all the doctors and professionals were wrong in judging what his status was at any given time. This is why I believe you and only you know the true picture of your dh's condition at any given time.
The professionals, see your spouse at the early stage or at least what YOU as the spouse deems to be the early stage...Everyone judges their spouse's condition differently. Many do not get a dx until years have gone by from when they first notice something different in their spouse others go very early for a professional dx.
I always judged my dh's condition with the reference of what he was like before I noticed anything. One of the major changes over the years that I could see that was not seen or undestood by the professionals (because they had no reference) was the way my dh walked. He was always a very fast walker and I could see his movements slowing down over the early years. Several time I would say to the drs. ..."see how he walks" and they would look at me like I was nuts. Of course, they didn't see anything different because they never knew what his "normal" walking was. Also, even though my dh could talk, carry on a conversation, and other things that appeared "normal" to anyone else...I knew they were not normal because most of what he was saying...never happened or happened in a different way. He would just make up stuff to fool others, but it didn't fool me. Also, in the earlier stages they can have good days and bad days. More often then not the doctor appointments were on good days. And, I never put too much stock in those test. I gave him my own test...asking him, what time it was, what day it was, when were the kids born, his mother's madian name and other questions I could use as a true guide of any decline. I would ask these questions in a way that he didn't realize he was being questioned.
Also, I do believe early on the AD medication did place him on hold for an extended time and we were able to travel and do lots of things that might not have been possible had he not taken the medications. However, after about 4 years on the medication, they seemed not to work any more and the downhill slide began. Not too fast in the beginning but as each month went by the downhill slide picked up speed. I am so gratful for the early years and we did have so much fun....so my suggestion....is have all the fun you can. You will be upset and may have a difficult time accepting some of the strange behavior...but, try your best to enjoy what time you can.
Sometimes it is amazing how little the professionals really know and understand about AD, especially in the younger person. My husband was in his late 50's when I first noticed something...dx in early 60s and died at 65.
We do know them better than anyone else. Just this past month I have noticed that when my DH coughs it sounds weaker. He has always had some sort of congestion, we live in a very allergy prone area of the country. And has always had a strong cough. It is the little things, and getting someone else to see what we see is so hard.
JudithKB..good analysis..on the need to trust your daily experience vs.a periodic medical exam; The daily observation of the course is invaluable, but is difficult to synthesize into a pattern that we can understand and can be fully expressed to a medical provider; this , coupled , with the general pattern of the disease that is not predictable across the range of patients, make this all the more frustrating. The expression of individual experience, always present on this site, is welcome and relied upon. Is a way to answer the question posed by the beginning comment on the thread.
JudithKB..good analysis..on the need to trust your daily experience vs.a periodic medical exam; The daily observation of the course is invaluable, but is difficult to synthesize into a pattern that we can understand and can be fully expressed to a medical provider; this , coupled , with the general pattern of the disease that is not predictable across the range of patients, make this all the more frustrating. The expression of individual experience, always present on this site, is welcome and relied upon. Is a way to answer the question posed by the beginning comment on the thread.
Kinda like the development of a child in reverse. The EXACT time they can't do things (what stage they are in) are less important than your knowing what is 'coming up next' and being prepared.
DO READ EVERYTHING YOU CAN ABOUT (typical) AD BEHAVIORS, but also know that not every person demonstrates each behavior. (If you see one person with AD, you have seen one person with AD)
I have been saved many times by reading about what others are dealing with and then being prepared to face it myself. I have also read about lots of stuff my wife IS NOT doing, and then sat back and felt grateful that I missed that one. ;-)
As for time? (wifes Sx began at 55, retired at 57 now 62) Early on I too was scared and worried about how I could last what is now 6 years and running.
Turns out it is easier if you DONT worry about how long your sentence is here in AD hell, and just take it all "one day at a time". 'cause none of us knows exactly when the parole board is going to suddenly commute our sentence. Jim
You are so correct and once your sentence is commuted you wonder why it all went so fast. It is like so many things in your life...when you look back you mostly remember the good things. I even say to myself somedays ..."it really wasn't that bad"...."I wish he had stayed with me longer".
On the comment " child in reverse"...there is recent movie- last 3 years, with Brad Pitt...title? "Billy Button" that has the theme of a life in reverse..is enlighting on this issue..recommend
On the comment " child in reverse"...there is recent movie- last 3 years, with Brad Pitt...title? "Billy Button" that has the theme of a life in reverse..is enlighting on this issue..recommend
It is so true, and so riveting when you begin to see "baby" traits in your former spouse. Mine, during his least functional moments, gropes around at things that exist only in his head, with his vision not working. Sometimes he gets his thumb in his mouth and actually sucks it, or sticks part of his hand in his mouth, or the napkin if he gets ahold of that. It's strange, and also sad and touching to think about what's happening.
My DH stated showing symptoms around 1999. He was diagnosed with AD in 2006 and stayed moderate for 2,3 years. He was in mid-stage until around 2 years ago. Last year became incontinent occasionally. In the last 6 months has trouble communicating- talking, understanding others. He has trouble walking very far due to neuropathy. His last neurologist visit (last week), the Dr. was shocked that his MMSE score went from 15 to 9. I was not surprised. He put him back on Namenda. He has taken DH off the drug in June because it was not helping. Dr also said there was no other med to give him. He has been on Aricept, and now Razadyne for at least 10 years. DH goes to Day program 3 times a week and seems to enjoy it, but is very tired after it. He sleeps a lot, day and night.