Dh has been really kinder and easier to get along with since the advent of, well, Celexa, than ever before and this disease has been fairly easy to deal with. I know you have all gone through the incontinence issues with me, but those also seem to be under control, at least for now. What I have been seeing for at least the last 6 months is a steady decline in his memory; and, lately, the decline seems to be getting steeper more rapidly. So, what I'm wonderin ... is this the expected trajectory of this disease? Can I expect his memory decline to start to accelerate? And, now he's doing things that he hasn't done before, requiring me to be more diligent in keeping an eye on him. I went out to the freezer tonight to pull something out for dinner and I discovered that the temperature was turned down to it's lowest number and the food was beginning to thaw. PTL, I found it in time. Now, I'm thinking that I have to keep a closer eye on his activities and he HATES that. AND, he's been obsessing over his guns again and he still thinks his daughter has them and I have to tell him each time that, no, I am now in possession of his guns and if the doctor says he can have them back, then I will give them back - the discussion always ends here. But, the point is, after 2 years he is now obsessing over these guns again. So, I think this is evidence that he is beginning to go into a steeper decline.
And, I'm wondering if I need to get him into a neuropsych now to make sure that he is properly medicated BEFORE I encounter a crisis situation?
No experience with this, but I would call the neuro. I would see about putting a padlock on the freezer to protect it of a locked cover over the temp control. I would get rid of the guns, but if you have them in the house take them to a locksmith and have them disabled. Maybe do it to one gun and see if that keeps him happy.
mothert, how wonderful to hear that your DH is kinder and easier to get along with. Fantastic! Such a relief and blessing that I am sure you are grateful for.
I know you would like an answer as to how he will decline, but sadly there just isn't an answer to be found. This disease allows for no planning. I have seen time and time again steep declines, and then sometimes, just as suddenly a rebound is shown. There is no rhyme or reason! Hard for us to accept....
As for the new odd behaviors, this could be a sign that he is entering a "new stage" or "phase". I think it is always wise to inform our doctors of any significant changes. A little tweak to his medicine might be just enough to settle and comfort him.
And oh no! Not the guns again.... doesn't it just amaze you the things they don't forget!
its my opinion to stay one step ahead of this disease if at all possible. it will alleviate alot of what you read here. getting the meds ironed out early on and adjusted periodically in my way of thinking is the best solution to have to avoid psyche stays for bad behavior and or aggressive periods. there is so much we have to learn about how to handle this disease and its complications. as we have seen most of us if drugs are needed or increased it takes tim e for them to stabilize on the dosings. in between that time they can become quite manic and hard to handle. the stages are just that. some fall in one stage overlapping into another so no set times or rules. and for me depends so much on which dementia they are dx'd with and where the disease attacks the brain. what i do know there comes a time when you have to watch them incessantly or they get into trouble so quickly. like your freezer mothert. you never saw it happen. glad you caught it in time. its always something that we discover to add to the stress. he may have a setback but plateau again and stay there for a time. it happens over and over. others we have seen here lately have a more aggressive decline rapidly. there is no control over what happens. divvi
For the past year our lives had become easier as far as my husband's behavior. Now, as mothert states, the memory is rapidly declining. We have blueberries almost every day in the morning, tonight we had some mixed in with other fruit for dessert. He asked me "What is this fruit called?" You could have knocked me over with a feather.... He's also asking the same questions over and over (this is not new but it is extreme), things that he seems to be scared about. I answer them and 5 minutes later he asks it again. This is constant. For the first time in a long time, I'm getting rather short with him. I've been trying to be so patient and most of the time I've been succeeding. So, now I'm feeling very, very guilty for being impatient. My daughter asked if the recent time change could be the culprit. I know that it was causing some problems with the very short days and had hoped the longer days would make him feel better. Now, we seem to be going the other way.
How true and heartbreaking all your words are! While much of what I have read on this site makes me tearful, your words hit so hard. I remember reading on this site someone (I think it was joan, but only read it once) being told by a doc "now it is your job to keep him happy". I was a new reader and this made me gasp as I thought "whose job is it to make her happy?"
A poster on another site wrote "if you fail to plan you plan to fail". She attributed this to someone but I can't possibly remember who or even the context.
How can any of us plan? I realize this is rhetorical. Even though my H's case has always been labeled atypical I find it hard to believe he is the only one and I don't fault docs for everything, not for much at all. But I do fault them where px is concerned. Can't they at least say that based on their experience and/or research, whatever, that a, b, or c, is at least probable?
I think of my father, really fortunate in the context of things: told that if he opted for surgery he had 75% chance of recovery, but 25% chance of death almost right after the surgery; possibly during it OR if no surgical intervention, very likely a chance of decent quality of life for 2 or 3 years (brain ca). I think of my friend, told almost to the month how much time she had left, so she COULD plan I think of my other friend, told almost the same about her H. She responded by putting him in a wonderful place because she knew she either did not have to settle on his care, or at least could absorb the cost for the approximate amount of time.
I'm rambling. I want to know- please give me those numbers!
Okay, tomorrow I will get on rounding up a Neuropsyche. I've been putting it off. Finding a new doc that you like and is helpful and takes Medicare, ugh, takes lots of time. It's winter, it's dark and gloomy and wet and cold, so I may as well, I have nothing better to do.
One of you above talked about the season possibly being responsible for sudden changes in their lo; I've wondered that, too. Only, with us, the advent of Daylight Savings Time has actually helped a lot with dh's drinking. With the longer daylight, he isn't as inclined to go so early for the wine bottle. I've been pretty sneaky about the wine and it has been working fairly well and it's pretty comical, too. I bought non-alcoholic beer and it tastes just like the real deal. It's in the frig. Dh knows that I frown upon his early drinking so he's been out in the garage sneaking beers - he hasn't figured out there's no alcohol in it and he doesn't see so well anymore and can't read the label. And, I go to Trader Joe's and buy a case of $2 buck Chuck - they are the regular size bottles not the magnums that I used to buy. I bring out one of those/night and that is it. I hide the rest and he thinks that's all we have. So funny how we all have to adopt these little sneaky strategies to keep our lo's out of trouble and save our sanity :-).
So hard, just waiting for the hammer to drop, though. I just know something is coming that I'm not going to like and it'll take me 6 months to get a handle on it and then it'll be on to another phase. I need a long vacation (like that's gonna happen?).
I hear the $2 buck chuck is pretty good. Last summer a couple was at the park to visit the wineries. They belong to a very expensive park down in California. They were telling for pot lucks that is the wine they take - this is a couple with a $250,000 motorhome take $2 wine to a pot luck at a high class RV park. He said the first time a guy came up to him and said: I thought of doing that but was of afraid of what others would say! Just a little humor!
I am happy to hear daylight has helped with him. I still have not adjusted staying away until 2 - the old 1.
mothert - from what others have said, there can be a rapid decline. Hopefully he will level out and maybe regain some lost skills, for a while anyway.
Yes, he could level off (hope so), he's done that before. Just when I think I know what's going on, it changes. Keeps me humble and leaning on the Lord.
mothert--my husband turned off the fridge and freezer (without my knowing) and we lost all the contents. After that, I set both of the correct temperatures and put lots of painter's tape over the controls. He never touched it again. This may be easier than a padlock.
As an FYI the reasons there are no good 'numbers' in this disease is that the knowledge base is so new and so limited. Chances after a surgery? That comes from thousands of patients who were ACCURATELY DIAGNOSED with the exact specific ailment and followed over time. Chances with a paticular cancer? That comes from thousands of people who have had the EXACT TYPE of cancer (Dx at the cellular level or deeper) and followed over time.
Chances or prognosises in the AD world? Without a 'test' to dertermine EXACTLY when it started or EXACTLY what type it is, or a way to observe the phyiscal damage happening over time, nobody has any mechanism of collecting accurate and exact information from the thousands of patients necessary to find the patterns.
AD has been identified as the most rapidly rising cause of death. It was down in the top 50 and now it is (as I remember) number 5. It is NOT that suddenly so many more people have it or are dying from it, it is because more doctors are listing it on death certificates! (THANKFULLY!) When I was in nursing school 20+ years ago we were specifically told that "Nobody ever dies from AD, they die from starvation or pneumonia or something else" That was inaccurate then and even worse now. The number one cause of death is "heart disease" because EVERONE'S death certificate lists 'cardiac arrest' as the 'cause of death'.
It is all a numbers game. Perhaps 20 years from now when they have a test to specifically Dx AD and differentiate it from all the other causes of dementia and they can test and follow thousands and thousands of people with each type of dementia only THEN will the numbers be known.
I think one of the scariest things about this disease is there is so much unknown. My h is on an anti-depressant and the exalon patch. He was also prescribed namenda, didn't like side affects and refused to take it. Dr. will love that. Speaking of Drs. the last time we were there I filled out the form that rated if he was worse, same or better in certain areas. Well the dr. spends 10 minutes with him and it is a good day. So she chastises me for how I filled out changes on the form, then turns around and precribes more medication. I know he is the patient, but come spend a day with us dr.
JGranny. my heart aches for our daughters. First they watched their maternal grandmother go thru the horror of Alzheimer's, finally passing away of untreated pneumonia in a nursing home. ( my wife and her brother elected to withhold antibiotics)
So much for cause of death stats m-ma'am
Now our daughters are seeing their mother, who was diagnosed with AD in 2008 travel the same decent into AD Hell. No reason for genetic testing, knowing does nothing to change the outlook