A year and a half ago, my wife was diagnosed as stage 2 Alz. Two weeks ago, she fell and broke her ankle, had surgery and is now in rehab. They have her secured to the bed with a canopy of nylon mesh that she can't get out of. That in itself is terrible, but, they have finished some add'l testing of the alz and are telling us that she is now in stage 5/6. That is rapid progression and I am having a lot of trouble beleiving them. I know that they are probably right, but, is there a chance that they could be mistaken? Have any of you questioned (or not beleived) a diagnosis? Or have any of you had one that was later found to be incorrect?
I can't tell you how much this has bothered me. I know that it would happen someday, but, not this soon. Not now.
I'm sorry to hear this Dean. It must be very difficult for both you and your wife right now.
I don't know that I ever realized that my husband had Alzheimers at stage 2. I suspected it but it wasn't until last year that I realized I had to get him tested. At that point he was diagnosed as having moderate Alzheimer's. My husband's neurologist does not believe in any stages other than early moderate and late. This disease is so different in everyone that he doesn't think it makes sense. Only after looking at the alzheimer's site and their descriptions of stages did I think my husband was at about stage 4 at diagnosis. It is almost 1 year to the date of his diagnosis (7/2/09) and I now think he is late stage 5. I think it is happening fast as well.
I don't know what to tell you. Take each day and appreciate what you have because it is changing right before our eyes and we can't do anything about it.
dean, I think most of us question diagnosis every so often. I know I do. One day he will seem almost like his old self and that is when I think "Am I imagining things? He seems fine today.". Then next day all the confusion is back.
When my Mother age 93, was in rehab following a broken hip, she was uncontrollable, trying to get out of bed, throwing her teeth at the nurses, swearing, etc. They put her in one of the beds like your wife. Hospitals and rehab really do a number on most dementia or older people. My mom showed no signs of dementia before her hospitalization. I think you will find she will become less confused etc. when you get her home. Some progress more rapidly than others. Mine went from mid to severe in the last year. Good Luck and keep us posted.
Dean, my husband was diagnosed in Feb. 2007, and now is in mid stage 7. He has had a rapid decline. Some stay at stage 5/6 for 10 years. This disease is truly a case of "if you have seen one case of Alzheimer's, you have seen one case of Alzheimer's" because no two people go through the same things in each stage, nor the same timeline; some lose the ability to talk; some start cursing and getting angry who were very placid, easy going people who never uttered a bad word! There is no ryhme or reason. You will be less stressed if you can just live each day and say "thank you for another day" if that is what you truly mean.
Some are saying "please take him and let him be at peace" and truly mean it. Most of us are in between and are afaid to say either.
Most people I have talked to recently about AD say that from diagnosis (usually stage 3/4) until death is approximately 5 years now as an average figure. But then, Alzheimer's likes to make liars out of the professionals.
All I can truly offer you is a hug, and a piece of rope with a knot on it, so that you can grab on and hold onto the rest of us. We're here for you.
Dean, my husband fell and broke his hip. I believe when they give anesthesia to a AD patient, it kicks the disease into overdrive. It puts the brain to sleep and when it wakes up, it's no where close to where it was before. They had to use restraints on my DH's wrists, he spit, cursed, kicked and was a wild man. THe worst of that went away, but he's never been the same since.
Different things will do this. An urinary tract infection will often bring on wild tirades in AD patients. The testing they do defines the areas of the brain that have been affected (MMSE) and quite frankly, most of the time they are correct. That being said, no two Stage 5's are the same...My husband is considered SEVERE, but can still dress himself and is...for the most part.. continent. Others in his stage cannot or are not at the same place, point by point. There is no defined way to say how quickly or slowly they will stay in one particular stage. Many of our people are diagnosed at a 5 initially. Perhaps you could arrange a personal meeting or phone conference with the Neurologist to discuss your concerns. It's much easier to talk to them privately about such as this. I blame the anesthesia for pushing her diagnoses into the more severe stage..but what do you do when they have to have surgery?
Early on, I was asked to draw a picture of Alzheimer's Disease in our lives... and in my picture, AD was a seductive, heartless vixen - with huge boobs..and she was stealing my husband away from me. There was nothing I could to to get her out of our lives and I drew her moving into our house with all of her baggage, all the while, shoving me out of the way.
Dean, a couple of years ago my DH had cardiac bypass surgery followed by 6 weeks in a rehab facility. His FTD was not too bad but he got the post-surgery psychosis and had to be physically restrained while in the hospital. Everything eased as time went by. So, as others here said, she may be much like pre-surgery once she gets home.
I wish I knew where I saw it, but as I was researching since joining this site in January, I found a site where they said research has shown that anesthesia does accelerate AD, including having someone show signs of dementia after surgery when they had none before. In that case it trigger the disease that was lurking.
There was a lot of discussion on anesthesia and AD progression on these boards and in my blogs awhile back. The discussion topic is http://thealzheimerspouse.com/vanillaforum/comments.php?DiscussionID=1248&page=1#Item_0
Go to the home page - www.thealzheimerspouse.com, and click on the previous blog section on the left side. Blogs #117 and 118 are about anesthesia.
It could be the anesthesia, or it could be the complete change to unfamiliar surroundings, being restrained in the nylon mesh, pain meds?, (for my recent hospitalization, the morphine put me in a state where I could not pass the mini-mental !! I passed it with flying colors a few days later.) The only way you will know is when she returns to home. I hope it is only temporary, and there is promise that it could be. Don't worry about things that haven't happened yet, be patient and know you won't have your answer until she is out of rehab. The "professionals" should know that many things can throw an Alz. patient "off." (And have shared that with you.)
I am on the prayer chain from my church. Yesterday I got an e-mail requesting prayers for a lady who had had "pretty major surgery" for a tumor on her sinuses. She is now having memory problems. I have said prayers that it won't go into dementia. I wouldn't wish that on anyone.
Remember that there's a big difference between dementia and delirium. Delirium is a short term deterioration in memory (and cognition) brought about by some event (infection, surgery, trauma) that is mostly reversible with treatment and time. Dementia should only be staged when someone is in a steady state or a stable state. People can be delirious for weeks. That is not unusual and seemingly "bounce back." You never know for sure until you give it some time. I'd be hesitant to declare a definitive significant change without giving it some time still. Hopefully it is just short term (and my guess is that it is).
Wish I could remember where I read it. I know it was during my research on Ronald Reagans illness. They believed the cognitive impairment was caused by the decrease in body temperature during surgery. Evidently it occurs from the anesthesia.
I had anesthesia with my recent collar bone surgery. Hopefully I'm not suffering from dementia. I could say "I'm fine, there's nothing wrong with me" but you all know how much that means. Please, somebody tell me if I seem different before & after surgery. I would want the truth.
It is almost impossible to diagnose someone at stage 2 because that stage is almost normal. But there are multiple descriptions that are called "stages" and someone in stage 6 of the 7 stage description is also probably in stage 2 of the ALS description.
In my husband's case his dementia was almost certainly caused by multiple resuscitations, but he also had a temporary and a permanent pacemaker installed that same day, and there was a head injury during the auto accident that began the day.
Also, just about everyone who's LO has been in the hospital has reported bad results JUST from being there. And the last time I WAS A PATIENT IN EMERGENCY my husband was reacting very badly just from sitting in the room with me.
yeah i agree kitty, getting out of the house and the surgery off your mind has lightened your load emotionally! in your case, the anesthesia burned some anxiety cells and left you better off.. :) just kidding. divvi
did i tell you we were thinking also that DH dementia could have been caused by black mold in our home over 12yr ago??? there was faulty siding put on by the builder and it leaked and mold grew in one long wall. it was mindboggling drs were saying it was possible he suffered toxic issues from the mold. how scary is that! then we had the PET/MRI that confirmed VaD..you never know... divvi
For about 3 years before my husband was diagnosed we put off his memory problems and behavior changes to chemo he received for bladder cancer in 2004. Everyone kept saying he had chemobrain. As it progressed, I couldn't put it off on that any longer. I believe (and a couple of his doctors have agreed with me) that the chemo may have made it progress or come to the forefront earlier than it might have.
it was affecting everyone. dogs had conjunctivitis all the time and breathing issues took them into vets every few weeks. DH ha severe severe allergies anyway and they increased with exposures to the mold. penicillium/aspergillius? in quantities are toxicwhen they give off spores or disturbed (sp) me, i had cough, burning eyes. runny nose etc, thought i had allergies too. after we cleared up the issues everyone was good again, except DH. then of course, DH had a knee replacement and tons of morphine which sent him over the top and then a hair transplant and lots of local anesthesia. i think it all started with all the above. divvi
In January 1997 my DH slipped on some ice and fell off the steps. He literally shattered his wrist and had to have several surgeries. He also hit his head pretty hard, but the doctors barely paid attention to that. They did an xray was all. (At my insistance that they check his head.) Their only comment was that he had a large sinus cavity. Seems that after the fall things begin to change bit by bit.
Alzheimer's risk up after temperature drop Published: March. 16, 2009 at 3:31 PM
U.S. scientists said a protein associated with Alzheimer's builds up in brain cells at an increased rate if body temperature drops, such as during anesthesia.
The researchers suggest decreasing the temperature in the brain -- as happens when someone is anesthetized or experiences hypothermia -- is linked to the formation of proteins in the brain cells that have been associated with Alzheimer's disease.
"We hope that this research will initiate an interest in taking precautions to limit the impact of anesthesia on the disease," Emmanuel Planel of Columbia University Medical Center in New York said in a statement.
For the study, the researchers compared two groups of mice that make the abnormal tau protein that accumulates in Alzheimer's patients -- one group was anesthetized and the other group was not. A week after the anesthesia, the anesthetized group had more of the tau protein clumps than the group that wasn't anesthetized.
Further, the build up of tau proteins occurred faster in those mice showing advanced signs of the disease.
The findings are published in the Federation of American Societies for Experimental Biology Journal.
Thanks again to all of you for your helpful info inre my question. We are moving my wife from the hospital rehab to a nursing home rehab on Friday. That will be for 20 days and then I will have to make a decision. She is only taking an occasion darvocet for pain, but, her memory and confusion is still terrible. Just hoping and praying that she improves so I can bring her home.
I recommend that you go to a recent MEMORY Magazine that has the best article on Memory Stages I have seen. The whole magazine is on .pdf format and can be found at following link:
http://www.alzinfo.org/PYM_Winter08.pdf
I belief that with this article on stages, you will be able to make your own assesment. It should get better when you get home. Bill
Now you guys are scaring me. I'm going to have some minor surgery done on my lower eyelid and will have a local anesthetic. (The lower eyelashes have turned in and irritating the eye) I''ll find out next week when it's going to be done.
Carolyn, I had my upper eyelids did about 4 years ago. Any of you with upper eyelids drooping over you eyes causing loss of a lot of perifial vidion Medicare will pay all costs for actually like a plastic surgery by removing fat from your upper eyelids and it does wonders for your morale and looks. It is done as a outpatient surgery and was painless and I took pain pills afterward. Your eyes look like someone has beat you up for a few days but you are soon up and about. I would imagine they will be something similar to your lower lids Carolyn. Not to worry. They give you a ointment to use several times a day and use it sparingly. Sometimes I would use too much and it would blur my vision.
WOW. First time I ever heard that Weejun. Thanks, but I think that picture was taken BEFORE the surgery. It does make you feel younger and look younger too. Now I am soon headed for catarac surgery, both eyes at different times. I want to wait until fall but I have difficulty reading and doing my crossword puzzles and on top of the stress of caregiving does not help with the stress. I bought some 3+ reading glasses this morning but they are not helping, as the eye Doctor predicted.
You will be so glad to get the surgery. DH really noticed an improvement in his vision when he had his. You'll do great, just follow drs orders to the letter -- you might want that neat grandson of yours to help watch your DH while you take care of yourself post-op.
Magnifying print, dear Lois, cannot clear up the cloudy film that has developed over your eyes. You'll be so excited after the surgery. With the exception of not being able to bend over for a day or so and not lifting, you'll feel just fine. Several people in my family have had this surgery and they always said it made a huge difference, immediately. I have some cataracts, but am told they are not "ripe enough" yet. yuk.
Last summer DH had his eye exam and got new glasses. During the exam, the Dr. inndicated that h has th bginnings of cataracts. Got new glass, and he was seeing double. Had him rechecked for the refraction and relacement lenses. Work well sometimes. h new glasses are put away. In the meantime, when he remembers, he tells some people he had the check up and can't see out of "this eye"(right). Others he tells, "I cn't see out of this eye."(left). The Dr. indicated that the cataracts are just started and it will be at least 10-12 years before we have to do anything about them. Go figure.
I had both eyes done near the end of last year. I couldn't believe the difference. Watching Law and Order SVU got to be a pain because the scenes were so dark. I thought they were taking a page out of the old French movies...NOT it was my eyes!!!!
Lois, I have also had cataracts removed from both eyes. There really is nothing to it. Recovery time is minimal. I was walking big dogs the next day. It does make such a difference.
Lois, I had cataracts removed from both eyes (a month apart) three years ago. As soon as the first eye was done I could not believe the difference in my vision. It was like a whole new world. The surgery is easy and makes such a difference, you will be glad you did not put it off.
I don't understand the post about wearing a shield for several months. Most people are well within a week...albeit, they do continue with drops for awhile.
I am going to see about scheduling the first surgery the second week of August. That will be the week following our whole family mini vacation in Amish Country and daughter's vacations, which are scheduled this month. Sounds like a piece of cake and I am so looking forward to being able to work crossword puzzles again.
ooooh, Lois, I've always wanted to go thru the Amish Country. They used to make the most beautiful handmade quilts in the world...I love quilts - I'm so envious. (do they even still make the quilts...they were like art!!)
Dean, hope it goes well in the next 20 days. I still think being in a strange environment affects them. Now she has to get used to yet another setting. Give it time.
The Amish do have strange names for their towns. I stayed in Intercourse, PA. Yes you read that right. I loved the family style eating with strangers sitting at the same table, passing food around.
The only thing I know about cataracts is that when I was small, my grandfather had his removed & put it in a jar! I can remember how grossed out I was. But he could see much better. Why would anyone want to keep such a thing?