Kelly5000, in another thread is talking about the rapid deterioration in her husband. I can only imagine how traumatic that must be, and how getting smacked with these new low-points like breaking waves must be a tough thing to bear.
But reading about it is raising a strange little perverse voice in my head which says "I don't like this limbo we're in. At least a decline would represent change." That seems like the stupidest sentiment anyone ever expressed, doesn't it?
I can say, clearly, that my husband is NOT getting better. And there are subtle signs of things being worse than at his Dx a year and a half ago. (not being to find anything by car anymore, for instance. Not to worry though--he's about to be dropped from the auto insurance and that will end that.)
But generally, I feel like we're trudging along in this same weird rut where I am frustrated and lonely, and he can't do much and sometimes knows it, but not usually. I have this sense that we're going to stay here forever and no stimulus will ever again enter our domain...it will always, for decades to come, be blah, shallow conversation about simple topics, and me sitting here at home trying to write useless, unsalable books and keep myself from going nuts, while he putters around doing nothing but putter.
That is why, for both our sakes, I sincerely wish I could just stick him in the car and drive him around the country...it would be interesting for him and keep my sane. But the youngest kid is in 10th grade and still needs me home--not for much, but he needs an adult around.
But the boredom and loneliness of right now makes me feel like doing flips (not that I can do flips,) and that silly little voice says "if he were deteriorating at least you'd have to DO something about it."
You don't need to tell me how lucky I am this is not the case.
You are making me feel so much better about myself! Maybe I'm normal after all. I told one person who I really really trust that I wish my husband would just get better or worse. If he got better I'd be way less stressed, less lonely, more intellectually stimulated, we could travel easily and often again, etc. If he'd get worse, then I wouldn't have people telling me he seems normal, his kids wouldn't be telling him not to listen to anyone who tells him he has a problem with his mind as he is in fine shape, we could settle some financial concerns that he refuses to deal with, I wouldn't have to wonder where his money went, etc. I wouldn't be just sitting and waiting for the shoe to drop and wondering if it ever will. But still i don't want things to be worse...I really just want them better. I feel guilty for even thinking the above thoughts.
Can you handle a third ditto. Today we put the chairs out on the patio. My husband didn't know we had chairs (he is the one who bought them a couple of years ago when I wasn't around). He didn't know where they were. He didn't know that we have left them outside all Spring, Summer and Fall and only bring them in for the Winter. He thinks it is going to snow tomorrow, and it doesn't snow in this part of Pennsylvania this late into April.
...sigh...
I logged taking my neighbor to her doctor's office, post-surgery and can't drive herself yet, as something I had done for myself because it got me out of the house for an hour.
This usually turns out to be such a LONG disease. I feel so much of what others have said - even though I know I should definitely be enjoying what we have right now it seems as if I will have help when we get to Stage 7 and in some ways I look forward to that. Last night the wind was blowing terribly where we are, but I knew if I put on the weather alert and it went off my DH would be frantic. Then I found myself thinking, "Oh well, if our RV was blown over that would be that!" and I wouldn't have to worry about the things on my mind these days. Starling - I had to laugh at your successful outting! We must be nuts, eh?
What is funny is that it really was a nice outing. She had her doctor's appointment. I visited the scrapbook store next door, bought a magazine, and then had a nice half hour of peace and quite in the very nice waiting room. I like my neighbor so I had nice conversations going and coming as well.
We really are a special club! I don't always have time to post.I still work a pretty demanding job and of course I take care of almost everything at home. On top of that my husband vocalizes from the time I get home. Even as I start this he has once again started. Endless questions... But I take a few moments several times a day to read .Starling, Frand,Emily, Joan ... you have all put words to my thoughts. Although we may be at different stages with handling this disease, we have such a commonality of thoughts. There are moments when I think... dear Lord..... this can't go on for years. And then there are those rare hopeful moments when I think maybe the diagnosis is wrong. Most of the time I feel like I am pulling away from the real world because its just too hard to try to keep both worlds going.I find myself not caring as much about what is going on either at work, or church or even the world.I can see how this disease isolates people..... These posts have become more real to me than anything else... I am very glad that I found this place .
Several of you comment about leaving your spouse alone for a period of time. I have not been able to leave my wife alone for at least the past year, even for a few minutes. When I go to the support group meetings, which are just downstairs in our retirement Inn, I have to get someone to sit with her. I tried leaving her in the "Living Room" with a cup of coffee and other people to talk to, but it didn't work. She started wandering around looking for me. She has been deteriorating slowly. She now gets very tired easily, and is having spells of dizziness (I call her the "dizzy blonde"). We will be seeing an AD specialist next week for the first time. I fired her neurologist after the 3rd visit because he didn't seem to be interested in her and she has just been followed by her FP for the past 3 years. She (the FP) referred us to the specialist. I'm not sure what he can do but it's worth at least getting another opinion.
There have also been several comments about the family doctor, or even neurologist, not making the diagnosis early enough. The doctors only see the patient for 10-15 minutes once a month or so, while we spouses have to be with them 24/7. I have offered to give a talk to our local medical staff on "Alzheimer's from the Caregiver Point of View".
A man in my support group said that there are two times in this process when you want them to get worse. He said it is in the beginning and at the end when things get so bad. I really understood his sentiment. My husband is very high functioning, but the last time we went on vacation, I determined in my head that it was the last. I drove and I said something that made him mad and he kept wanting to jump out of the car or have me stop and let him out. I didn't stop, drove straight to our destination. I never thought about the problem of being on the highway and him not wanting to get back in the car. I figured that if that had to happen, that I could call 911 and they would help me solve the problem. I thought if I showed up without him and told our children that I had left him on the highway in the middle of no where, that I would not be very popular. Nor would I do that.
marsh - if you find out anything about those dizzy spells I'd like to know. I am the one that started the 'vertigo' discussion. After several posts I intended to take DH to an ENT. Guess what? He wants to wait until August when we get back to our home doctors. So, unless it gets worse - I'll wait, but now I wonder if that goes with AD?
Frand Marsh .. About three years ago my husband had serious episodes of vertigo. This was before the AD dx. he had all types of tests but none developed into any diagosis. At that time he was able to express what he was experiencing clearly. Eventually, without a diagnosis or treatment( just meds for dizziness ) the episodes just stopped. Six months ago he was again expressing to me that he was dizzy and his head seemed to "vibrate". Unfortunately when we went to the doctors he was unclear in being able to describe his symptoms. His PCP discussed with neurologist but did not prescribe meds. Again the symptoms subsided. Just this week he has again said he is feeling dizzy often during the day. I'm not sure that going to his doctor again will help. When there he seems to answer questions in haphazard way and with all the questions the doctors ask, the symptoms seem to change and expand. It is very frustrating. If you get any better information from your doctor I too would be interested.
I'm kind of in the weird feelings boat right now as well. Robert had a follow up appointment this week with his psychiatrist. They did the computer test for memory that they did last time (a little over 3 months ago). Robert scored as well this time as he did last time. He's been on the alz meds for a little over 6 months now. His doctor said that he shouldn't be doing this well and now is not sure exactly what Robert has. I have really been thrown for a loop.
I'm sure I have read about other people who respond in an almost miraculous way to the alz meds. I'm not sure that I agree with the doctor on this one. I have seen a little decline in the last month or so. But, it has been very subtle, not even enough to mention. Three months ago, Robert was keeping up with the household chores everyday. He was very productive and was preparing meals for us everynight. Now, pretty much all he does during the day is surf the internet and read newspapers (which he throws all over the place). He asked me to give him a list of chores to do each day. I made a Monday list, a Tuesday list, etc.... I tired to make them fairly short lists. Well, he's not done but a couple of chores the whole week.
He is forgetting strange things. He forgot about this huge bookstore in Lexington that has been there for about 10 years. We were going to his doc appt and he said, I'd like to go to a bookstore before we go home, do you know where one is around here? I really thought he was pulling my leg, but he wasn't. He seems to have holes in his long term memory.
I'm really confused and feel about like I did before we had any idea what was wrong. I hate being in this limbo state of not knowing what you're really dealing with.
Leighanne, my husband was doing household chores every day, and slowly stopped doing most of them. I made lists and that helped at first, and now he forgets to look at the lists.
His neurologist said that they get worse, then level off for a long time, then begin descending again, then level off. So it could be that your husband has been in the level-off phase right now. If he has not had a PET scan, you need to get one. It is a 99% certain diagnosis with a PET scan, I've been told.
It has been 7 years since DH was diagnosed. There are plateaus that seem to last of months.The disease is progressing slowly. He had an early diagnoses.
Your psychiatrist doesn't seem to know that much about AD... which, unfortunately, isn't that unusual.
A neurologist diagnosed my husband with moderate dementia in August 2005, and put him on namenda. Three months later, she examined him again. He did much, much better on the test -- so much better that she kept saying it was a miracle. She insisted it could not have been the namenda, and began to worry that her original diagnosis had been wrong. She ordered a second PET scan -- which showed the same evidence that my husband has AD as before -- and then suggested that we get a second opinion. We enrolled in a longitudinal study at a local Alzheimer's Disease Research Center (ADRC). This study includes a thorough neuropsych evaluation (2 days) by a staff of specialists once a year. The staff hold a clinic every couple of weeks to discuss the patients. After my husband's first exam, his results were presented in the clinic, and the staff unanimously agreed that he has AD.
I'm not sure that his improvement was entirely the namenda. It has become clear that my husband's symptoms are very sensitive to stress. He had been horribly stressed the first time the neurologist saw him, and we had gotten rid of some of the worst causes of the stress by the next time.
That said, there are a couple of people who post over on the Alz Assoc site whose loved ones have responded extremely well (i.e., showed significant improvement) after being put on namenda and/or aricept.
Anyway, in January 2007, we enrolled in a clinical trial for huperzine A, which is in the same category of drugs as aricept and exelon. (It is widely used in China, and reportedly is better-tolerated and more effective.) The study allowed participants to stay on namenda if they were already on it. My husband has been holding fairly steady since then. The woman who evaluates him regularly for the trial is thrilled.
Again, I'm not sure it's entirely the drug ... my husband has had some training in psychology, and I think he "reads" the woman pretty well and uses her body english to help him decide which is the correct answer. He talks about doing so after each session. In my opinion, he is definitely worse -- not a lot, but, on average, he has more problems than at the beginning of the trial. But they are subtle things which perhaps would not show up on these tests.
And he still appears normal to people who do not spend a lot of time with him. This despite having been diagnosed with moderate dementia nearly three years ago. (And I could see why the neurologist thought he was that bad at the time.)
Bottom line: AD can progress very, very slowly in some patients, especially in the earlier stages and the later stages. I've seen reports that patients can have five, or even ten, good years before they go into a steep decline.
It is an awful roller-coaster ride. Sometimes he seems so normal to me, too, that I grasp at straws. But then he can't remember how to open the front door of the house in which he's lived for 18 years, or asks me the same question twenty times in two hours, and I know the doctors were right.
I just hope and pray the disease will continue to go slowly for him, and look for ways to minimize stress and keep him as healthy as possible.
My DH progressed very slowly. I cared for him for 10 yrs, another woman I know cared for her DH for over 20, and I've heard of others who have progressed very quickly, a matter of a couple of years. I know my DH had AD for decades before the bizarre behaviors came out--I just didn't know it until years later. He was fine most of the time--still, I felt uneasy, couldn't put my finger on it--well, many of you know those feelings. I certainly never recorded any of this, and now it's hard to remember. But one doctor told me about progression. As I recall, don't quote me, it can be 3 different ways. One is like downward steps, down a bit then a plateau, long or short, and you think it was a misdiagnosis; another is a steady decline, fast or slow, like a downhill ski run; and finally it's like stepping off a cliff. So the length of time plus the different manners of progression make it impossible to get a grip on it, to really know what you are dealing with.
Then it is very had to get a definitive dx, even w/PET scans, altho they are getting better. It is often misdiagnosed because so many symptoms can be the same for AD, Lewy Body, Parkinson's, frontal lobe, vascular & strokes, head trauma, infections, allergies, aging, on and on. Then the doc says 'oh, it was/wasn't AD afterall, now it's XYZ.' Then we ride the roller-coaster & the yo-yo and try to make sense of something that doesn't make sense.
All this is the same for parents or spouses, but the emotions and needs are different, I'm so glad this web site is here.
My husband did a turn around with Nemenda. He was already on Razadyne which didn't do anything. He was under a lot of stress just before he got up to full dose on the Nemenda. We had gone to our daughter's house for Thanksgiving (whole bunch of people) and our grandson's birthday (a smaller party, but no place to get away from it because the house is so small). He was disoriented and showing a lot of stress. We got home, the dosage got up to the full level, and it was as if he had gone back to the way he had been a year earlier. Everything calmed down.
Actually he didn't go all the way back although the disorientation did get better, a lot better. Some of the activities he had given up were still given up. Some of the things we no longer could do, were still not something we could do. But things were, and still are, better.
Not only does this set of diseases follow different time lines, we tend to forget that they are a SET of diseases. Not only are there different time lines depending on which one our LO have, there are different time lines depending on when we finally figure out what is going on.
Your "over analyze" comment hit home with me. I wrote in an early Blog, that because of my background in Speech/Language Disorders and Special Education, Sid's neurologist told me from DAY ONE, that I would run the risk of "over analyzing" everything.
Like you, I notice subtle changes and think - are they subtle changes? Are they me over analyzing? Besides everything else it does, this disease can drive you CRAZY.
I was always thinking my DH had been misdiagnosed also, some memory problems yes, but I thought it was just aging. Then one afternoon we went out to dinner and I thought it was so nice, I kept the conversation to the here and now so we didn't have to deal with any memory problems. Then as I was driving home my DH said to me that he wished his wife could have joined us, that sure was a good meal!!! Needless to say I was stunned. I asked him where his wife was and he said she is at home. I definitely knew then that the doctors were right, and it was downhill after that for about 6 months. Then the hallucinations began and not eating or drinking anything. It was like a tornado happening everyday things got worse. there was no stage at that point, just a downward spiral. I stayed in denial so long, that I then feel like I was in shock the last 6 months. It was one thing after another.
I can sure relate to the concern about "over analyzing", especially when the first response of people I tell is "It can't be that, he appears so normal"!