I was thinking today that, in reality, my dh has probably had this disease for at least 5-6 years. I think back on some very dumb things that he did that were not like him and a general slow decline. Today, his st memory is getting progressively worse each day (alaong with other physical declines) and he was getting pretty explosive until he was diagnosed and started on Aricept. So, that leads me to believe that the first few years are subtle and hard to detect, and wondering what the next 5 years in the progression of this disease generally look like??
mothert--my husband was dx with MCI in 6/05. By 01/09 he was out of the early stage of AD and starting on the middle stage. I remember asking his doctor some time after that if he thought the disease was speeding up. His answer was "No, it's just harder for him to compensate and cover up for the deficiencies now, so it seems like the disease is going faster". Still in the middle stage today, but I see weekly, even daily changes sometimes. He was a master at the cover-up in the beginning, but now it's all out in the open. Biggest challenge is agnosia; much of the time he looks like he's blind. Today I saw him try to sit on a mirrored coffee table instead of the sofa--hard to keep him safe in the home environment, but I'm doing my best.
I too, believe DH has had dementia for at least 4 years from the things he did. but only in the last 2 months did I get a dr. to say he actually had moderate to severe dementia...He was prescribed with namenda,, If I had not had this trusty computer to research all this, I certainly would not have known it then.. Dr.'s do not want to come out and declare a diagnosis.. But I think we as caregiver would appreciate more info...So when we went back for a check up this week. the dr. ask what changes we'd noticed with namenda... NONE.. so his reply was that was the strongest med. he had for the condition and he saw no need to add to or even recommend another...indicating to me that DH's case is more severe that dear Doc, wants me to know.. So,DH is once again considering total knee replacement..That whole idea was squashed 1 day from surgery back in Feb.when they did the stress test and found his heart was not functioning lower half...In the weeks before that episode I had rehab lined up with entry dates.. home care arranged.. and as you all know thats work.. So, I cancelled all that and here we go again. None of us want our LO's to have this but none of us are so delicate that we can't accept the truth and plan... Day to day changes are frustrating and keeps us ready to slid off this cliff. DH has cancer, macular, severe arthritis, knee , heart problems and dementia...I can't interest him in any activities.. Just sits and stares at the wall and eats when it's ready... makes no sense when we talk and if he gets any slower, he'll be backing up.. we're doing our best friends... I'd love hearing if any of you have similar situation with namenda...
I can look back now and see something was going wrong almost 15 years ago. Did not know it then but can see it now. And in the 6 mons before DH retired from his job it was there for everyone to see. I can see a decline from month to month and I do think it does speed up and then stop and speed up again. But I am not a doctor so what do I know. We are on Namenda only also, doctor wants to add aricept the next time he goes in. I'm not sure if I want to rock the boat as DH is very good at doing what I want.
I don't understand why the docs want to add drugs like Namenda and Aricept or Exelon, etc. to what is already being taken. Is there an upside to the additional drugs? Our neurologosit added Namenda to the Aricept about 3 months ago and within 4 weeks I could tell that things were going downhill and eliminated that particular drug. Our leader at Senior Center Support Group was not susrprised that Namenda did not work out and had very low opinion of that drug. For the cost of that drug, they should have better guarantee.
Funny about "if he gets any slower..." I feel the same about my dh. Hes' 6/2", I'm 5'4" and I can walk him under the table. In fact, I think I can walk backwards faster than he walks forward. I wonder if this is a balance problem, a sight problem, a focus problem - I'll never know because he would get totally upset with me if I even asked.
I see a much speedier progression in this past year than the years before he was diagnosed. Although I can look back and see that things were definitely going awry, it has been much speedier this year.
We have been told that the disease can start with symptoms 20 years before we realize it. As marilynMD's doctor said - they come to a place where it is harder to hide. Peggy - your husband's knee and heart problems did not show up suddenly - it started a long time ago but it took years to be really noticeable: same with AD and other dementia's. I can look back and see actions that caused my hb to be fired in 2003 but he was not diagnosed until 2008 when I was fed up with repeating everything cause he either did not hear or remember. I thought it was selective hearing.
As for Namenda - remember these drugs help less than 50% of the people. And, there are many like my husband who had negative reactions just like others have had with aricept. I would actually give your doctor credit for realizing there was no benefit and taking him off it.
Since we started traveling last fall I have been surprised at the new memories my husband builds. Each place we move to he learns peoples names, recognizes them by face and partially finds his way around the towns. He can even still remember some of the people he made friends with last winter down in Quartzsite, AZ. He is surprising me and I thank God for these bright spots in his life.
I agree with Marilyn's post-as it gets harder for them to hide the problems it seems like they progress faster. In DH's case he declined from early stage to mid-stage within 3 months but has stayed pretty much the same for 2.5 years. As for combining Aricept & Namenda (or other meds) the drs claim they act together to help with memory. DH's experience with Namenda (or should I say my experience) was bad....he became paranoid and violent.
The Aricept definitely had a positive effect on my dh moods; but the cost has been diarrhea. I've tried just about everything to help him with that problem. When we cut his dose in half, the diarrhea went away but the attitude returned. Since then we've added an anti-depressant and I'm thinking of eliminating the Aricept for a while to see if it helps with the diarrhea problem without the attitude returning. PLrobably should run that one by his doc first.
Immodium for diarrhea. As you know, Peggy, he can't have the knee surgery - but try some creative thinking.. you can get the red capzasin tubes at the drugstore; if you tell him the doctor recommended it, he might use it. It helps some with the knee pain.
Charolette, you are so right about symptoms starting 20 years before dx. Now when I think back years ago, I remember things dh did and I thought he was just in hurry. I never dreamed we would be in Alz. World. I just didn't see it coming, sucker punched.there needs to be more awareness of this disease. Its becoming an epidemic and people don't even know it.
Briegull - I already give dh 2 Immodium caps/day for diarrhea + 2 tsp/day of Benefibre. It is helping somewhat, probably a lot, but it's still a problem. We can't go anywhere without fear of a poopy episode that I have to clean up. Just a mess!
I too look back and see Alzheimers started a good 20 years ago.DH always had a good sense of direction,it was the first thing to go.He now is in mid stages.
I can't tolerate any pain medications orally(landednin ER on last one I tried). I can tolerate the Flector patch, the medication also comes in an oil and in a gel(different drug companies) It is a prescription,maybe your DR. would give you some samples.I know a few peple with severe knee problems,but can't have surgery due to other conditions, they swear by it.
My DW was taking Aricept at night and was having very loose bm. I changed it to the morning and give it to her after eating breakfast. I think this has helped her she has been doing this for a month now with no issues. I do not think Aricept does anything anymore, but we continure it as long as there are no other issues from using it.
In my dh's case which is mid-stage, I have to say that progression is slower. Hard to measure memory loss. I know dh's is severe in the short term. Only when the occasion presents itself and something is brought up, that I really know how severe it is.
Hmmm, thank you, Moorsb, I will start giving dh his 1/2 dose of Aricept AFTER breakfast instead of when he first gets up in the morning - see if it helps.
I see the changes in symptoms kinda like changes in light & dark throughout the seasons.
If you look at an almanac you will see that you lose or gain about 1 minute of light/dark each day - every day. However you dont seem to notice it until the light/dark changes pass through an activity period. (getting up in the morning, dinnertime, end of work day etc.) Then you comment that "Boy it sure is geting dark earlier and earlier." It has actually been changing all along, but it just interfeers with you life more right now.
When you finally get used to rising 'before dawn' and eating dinner after dark then the sun shines in your window at 4AM and you complain again.
I think we get use to a level of ability/disabilty and we adapt to it until it becomes invisible to us. Then another deficit develops that finally cant be ignored and 'poof' we think they have taken a big slide down hill when it really has been consistant losses all along.