JudithKB reminded me today that I came here in 2008, and when I checked the date, I realized today is the 3rd anniversary! I cannot tell you Joan, how much your site has helped me navigate the troubled waters of AD caregiving. I have other forms of support as well, but this one has by far been the most important source of help. A million thanks!
Now you made me check and I discovered my AlzSpouse 3rd anniversary was in November(!) My how time flies when you are having a good time . . . !
I guess it is a chance to reflect on all the losses and deficits that have occured during that time and think about what I need to do to prepare for next year. I have already added Ativan to stop the incessant crying. (Very effective, THANKFULLY)
I think I get to look forward to; stopping driving (and arranging other transportation) changing day activities from the Senior Center lunch to a formal AD day care and looking into some kind of 'home care' while I go to work. I am so excited I can hardly wait. . . . Jim
Interesting. September marked my 4th anniversary of AlzSpouse participation. We'd gotten our AD Dx at the beginning of that year, '07, but didn't get the PCA part nailed down until '11.
It will be 4 years for me come May when I first found this site. Can't believe it has been that long. I remember I was so worried (and I still am) when I first noticed the change in my dh (that has been 5 or 6 years ago) because he was so young
The one thing I haven't done during these years is keep a record of his changes. I wish I had a record of that info. In 2006 I think I was in denial and then when it couldn't be denied any longer, I took him to the doctor in 2007 and got dx.
MarilyninMD, you've got us all checking. It will be 4 years next month since my DH was diagnosed. I found Joan about 6 months later in July. We first noticed symptoms in 2004 but I was definitely in denial for 4 years. While out of town spending Christmas at our daughter's, he was so confused we couldn't be in denial any longer. I made an appointment as soon as we returned. He was diagnosed in January, 2008. This is a hard journey. We don't know what to expect next, how long we can keep them at home or how long the whole journey is going to last.
also 4yrs for me as a member in feb. til then i was a no mans island on my own. no support group or backup. solely on my own for 8yrs and we are now on 12th and running. finding joans was the single best relief i had in dealing with this horrible disease. it was like an oasis in the desert knowing 'others' were out there alone and in the twilight zone.
I joined this site in June 2008. DH was diagnosed in September 2007 but, now that I know more, he had problems long before that. I figure it has been going on for at least 15 years I just didn't know the signs and any form of dementia was the furthest thing from my mind, I just thought he was turning into and old grouch.
I’ve only been here a year and a half (since 6/10). DH was dx in March of 06. He was dx with “early dementia” & I was given the book “The 36 hour Day”. When I started reading it I thought, “I’m not going to need this! He doesn’t have any of those symptoms.” The neurologist really didn’t give me a good picture of what dementia was all about. As DH declined & I asked more questions I got more enlightened. I finally went to a support group & I met a lady who told me about this site. How grateful I am to her. I have learned so much here.
My 3rd anniversary was November 8 (11/8/08) and I found this wonderful site by accident. DH was diagnosed in July 2008 and we had a terrible 6 months afterwards...physical violence, psych hospitals, etc. Iroically my first post had to do with allergic reactions to the psych meds. It was Starling who suggested that it might be scabies, and it was. This site has been my savior and has provided me with the best information I have found. This is my only support group and I visit at least once a day for my sanity.
I joined this site 4 years and 7 months ago. It has been a life saver for me. DH is 88 now and the time is coming soon for the dreaded nursing home. Some days I am ready to drop him off, ring the door bell and run like heck. Then we have a few good days and I say I can do this. Why is it so hard to do what you know is best?????
I joined February 2008 - Almost five years ago. My husband was diagnosed in January 2007, but I knew he had it in January 2006, and it took me a year to get the doctor to confirm my diagnosis.
If I go by the date of diagnosis, he lived 5 years and 6 months after diagnosis, but in reality, it should have been 6 years and six months.
Joan's site saved my sanity. All of us helped each other through every different stage, action, loss, and emotion. I couldn't have survived without you all.
So many have spice who were diagnosed 10 - 15 years ago, and are still with us. I wonder what the average time of those here at Joan's is from diagnosis to passing. And those still going...is anyone's spice been diagnosed for more than 20 years?
I lurked on Joan's site for a while before I figured out how to become a family member. It is still my wake up call almost every day. The wonderful friendships made, and lost, are part of my life now.
I don't know if this is true or not, but it seems to me like the older the spouse is when dx the longer they have alz. Also, if the spouse has other health conditions that probably affects the alz. as well as the alz. affecting the other health conditions, like heart, lung, etc.
When you read the avg. lifespan is 8 years from dx you really have to wonder how true that is since many didn't get dx until they were several years into alz.
Bama, in answer to your question, I think it is because we think we can care for them better than strangers (yes), and we think that down deep somewhere they do recognize us. However, I don't believe it is true very often - I know that only every great once in a while did I get an inkling in his eyes that he knew I was his caregiver - he didn't know I was his wife for years...I think that the caregivers can continue to care for them still while in a nursing home, and that they will be clean, fed, watched over, and protected - maybe not as good as you could at home (as long as you have your health, energy and sanity), but most will be treated well at the nursing homes, especially since they won't know when you will show up - and you can get your much needed rest. There may be one or two that still recognize their spice on rare occasions. But that isn't enough of a reason to endanger your health. The first rule of being a caregiver is taking good care of the caregiver - if you don't, you won't have the energy and health to take care of your spice. If I had not had male agency people coming to my house daily to get him from his bed to his recliner and back those last few months, I would have had to place him. He couldn't stand and I couldn't lift him. I had to call the fire department four times in the last months when his legs gave out and he just sat on the floor and I couldn't get him up. I would call them (they were two blocks away) and they would come and put him back into bed for me. That is when I stopped trying to get him out of the bed. I don't know how I did what all I did, looking back on it!
I was one of the few who was able to keep mine at home all the way through. I had Hospice and paid an agency to be with him while I worked - 7:30 a.m. until 5 p.m. Monday through Friday. From the time I got home from work until I left the following morning, I took care of him, the house and me. Now that it has been almost 6 months since he died, I am learning how to relax and not have to organize every bit of my time....to do things at the spur of the moment again. But it is still baby steps. I almost kept him home too long even with help.
DO NOT FEEL GUILTY for recognizing that it is time to place them, and don't wait too long.
In answer to the question about how long AD people live I dont think we will ever have an accurate answer. The average age of "onset" is 73. (how they know this I donno because of course there are no good standards for making the inital Dx) But as long as AD is a disease of aging, then to determine the life expetancy after Dx you somehow have to account for the fact that the person also has a 73 y/o heart, lungs, cancer & diabetes risk etc. What is the life expetency for a "normal" 73 y/o? The statistical problem for us is that is is known that AD victims lived the MAJORITY of that time in the most severe stages. If they lived 10 years and it was 9 years of confusion and one year in bed it would not be so bad. But to live with 2-3 years of confusion and 7-8 years of total care is very expensive and debilitating for us.
In my case my wife has only become HEALITHER after Dx(!) Always obese and hypertensive she had a basic workup when we switched PCPs. Since Dx she has lost 50 pounds without exercise (no more stress eating) her B/P is a perfect 110/70 and her cholesterol is perfect. Age 61 and all her mortality risks are evaporating. As her mind becomes worse her body continually improves. I have declined her PAP smears, mamograms and colonoscopys and the PCP finds no problem with this.
I guess the question is, how long SHOULD a person live after Dx? Personally I see no reason to make it any longer than necessary. . . .
I'm with you m-mman. I care for Jeff, feed him well, keep him safe. But I'm not sure about continuing with the bp and lipids meds...if they'll affect his short-term comfort, sure. But to extend longevity? I don't think so.
How long people live with AD is a tricky question. It all depends on at what point DX came in the disease process, which can vary greatly. I think the question should be rephrased as something like: How long do people live with AD after symptoms like memory loss, personality change, change in judgment, etc., affect their ability to lead a "normal" life?
My husband's first outward symptoms (loss of sense of smell, which he perceived as loss of taste) was 11 to 12 years ago. Then came short-term memory problems, which must have been affecting his performance at work. He went to Whole Foods and bought ginko capsules and told me about it. At that point, there was absolutely no way I would have guessed this myself, because he was so good at compensating. Yet, the memory problems/changes in judgment didn't become pronounced enough to cause me some concern till about 2003. Not dx till 2005 with MCI, probably slipped into AD in 2006. So if I count from DX, it's been 6 1/2 years, but from the first signs, probably 12.
So when you hear about people living as long as 20-25 years with AD, perhaps it was because they weren't able to cover up their very early symptoms? Just my theory.
JudithKB--I have heard that people with the genetic EOAD do have a shorter lifespan. However, not everyone with a DX under the age of 65 has the genetic form--my DH has the "later onset" type of AD that just occurred under 65.
I don't think my dh's type is the genetic form. He has told me and it has been confirmed by other memebers of his family, they don't know anyone in his family who ever had alz.
Somtimes, I wonder if he has vascular dementia. I ask the dr. once and he said he was sure he probably had some of that too. Of course, I didn't even know what vascular dementia was and I had asked because of his heart condition. But, as time went on I was sure it was Alz. and very classic...On the Fisher site he has been a text book case going through the various stages.
Like Jim we have EOAD. The geriatric specialist for the region said the average is 8 to 12 years with EOAD. Some live up to 20 years because progression and areas of progression really do range.
My wife was diagnosed late July 2008 and at that time was virtually normal and still driving. Today she has literally no skills and is on the last steps of holding a fork and even though I am feeding her more than me (200 lbs), she is steadily dropping weight from 130 to now just over 100 lbs.
Our third year is Jan 7th,wife now in ALF an has been since Memorial weekend of 2009,very combatant at first but now just a shell went downhill very fast the last six months,diagnosed fall of2008