Been living with AD or possibly FTD diagnosis for three years with symptoms before that, but every once in awhile - not so often anymore - I find myself wondering if he really has AD or perhaps this is something else. Brain damage of some sort and maybe he won't progress but stay this way. (He was dx at 64, I'm 58.)

1. Do any of you have those thoughts?

Just lately DH has been so pleasant to be around, congenial, virtually never combative like he was so much the first couple years, still drives, cooks, and this new "phase" he is in is so different from anything before. His executive functioning is ZERO but lately he's been helping around the house WITHOUT BEING ASKED. Not always, but sometimes. That's so unusual. The first couple years were often miserable bringing out the worst qualities of DH and it was driving me crazy. It was hard to find compassion and fondness for him then. But now he's wonderful, a joy, funny, helpful. On the other hand, he has obviously LOST memory and abilities esp. around abstract thinking, and he seems sort of child like, but I enjoy his company and now I feel even worse at the thought of losing him to this disease. Before it seemed hard, but now it feels like it will be a tremendous loss.

2. Have any of you experienced these phases in behavior and personality like this going from a year or two of selfishness and combativeness to sweetness and congeniality or something similar?

Lately I've been thinking/hoping it's not dementia but something that won't progress further. None of his MRIs or Petscan showed anything which could definitively point to dementia so the DX is strictly clinical and the neuropsych tests leaving me with that little window of hope. Please share if you've gone through these things. I'm feeling a bit bonkers.

We still have no diagnosis although our PCP feels it is probable dementia of some sort. Yes, I would say my hubby is less agitated, less anxious, less argumentive, less miserable than a year or two ago. But I think that is more a result of the reading I've done that has helped me respond better to how hubby is. Now I very rarely correct him when he has facts garbled up nor do I tell him that I just told you that or that we spoke about that yesterday etc. So he has less need to be defensive which is positive. I've also tried to keep to more of a routine as he functions better with that and to avoid too much activity or change for him. Overall I still see decline though. He is less communicative verbally than a year ago / less able to adapt to new situations / less initiative and seemingly less awareness of the changes happening in his life.
Because we have no firm diagnosis I sometimes wonder if I'm reading too much into his various behaviors (and think maybe I should quit reading up on this topic) but then he'll say or do something and deep down I know something isn't right and that our PCP is bang on about it being a dementia.
My hubby has also gone to being sweeter and more pleasant but it comes and goes for seemingly no reason whatsoever. Sometimes I know it's due to fatigue or overstimulation or too much confusion going on around him. But other times I can't figure it out.
When I last talked with our PCP about my concerns I mentioned that sometimes I'm sure it is a dementia and then other times DH can be quite sharp and with it, and I think (hope?) all is well/nothing is wrong. Dr's reply was that can be typical of dementia----good days and bad days----good moments and not good moments etc depending on fatigue or activity level or what else is happening around person. As Joan mentioned in a recent post, there can be decline and plateau and sometimes it probably happens simultaneously in different ways with different aspects of our LO's lives.
I wish we did have a diagnosis. Some people are starting to notice things with hubby that aren't normal but they're attributing it to him being unreasonable or stubborn or rigid or uncaring. Someone recently challenged him about something that had happened (I wasn't present) where he didn't interact well. His normal nature was quite gentle and genuinely concerned about people and he'd had an interaction that was anything but that. It upset me when I heard about it . . . but he won't/can't talk about it at all. Likely he had no idea why the other person was so concerned about what had happened. But how do I explain to that person that what occurred is likely a part of something that hasn't been diagnosed???
(I know . . . we need to get a diagnosis . . . dr has done several tests to rule out other causes and spoken with hubby about cognitive possibilities but dh is far from being totally incompetent so I can't force him to get neuro/psych testing if he refuses.)

Terry, my husband went through an unreasonable,angry and aggressive period - it's still there under the surface - but he has mellowed out at age 90.
I think it was part of his personality and part Dementia, probably of the Alzheimer's type.
What I wish I had paid attention to: protect the financial assets, even if you have to move most to another account that he can't access. Two years ago I found out that he had emptied the bank account that I paid the bills from, and with the help of his kids, moved all to another account. I didn't find out until cheques started to bounce , and I was stuck with $31,000.00 worth to make good. I had to borrow money to pay the debts, then I hired a lawyer and go for guardianship.
I enjoy his good times now, but I'm aware that his brain is affected, with all that means. It's like walking on eggs.

Before AD my husband was a type A, organized, always volunteering to be in charge, responsible person. With our kids it was his way or the highway. He was a good husband and father, but not a people person. His dementia probably began 10 or more years ago. Short term memory and executive function were first to go. His personality has changed, he is easy going. He no longer wants to do anything. In many ways he is much nicer. He will go along with whatever I decide. This has been a huge change for me, who now has to make every decision. It doesn't help to ask him for help, he has a hard time understanding what I am talking about.

Mine was withdrawn and not very pleasant to be with for several years. If I look back at my earliest posts here a couple of years ago, I know I was very detatched from him, not very forgiving as he lost abilities, etc.

.. and now he's sweet as can be most of the time with me and with our daughter (note I'm leaving out Andrew, the CNA, whom he yells at while doing what he asks!) He has lost all his ADLs except eating, and though still verbal still confabulates, has aphasia, etc. It's not really a roller coaster but if we've been in valleys, we're now up in heights. Or at least small hills.

Briegull and Joan, Oh of course, this sounds like what you describe. DH doesn't "appear" dependent although of course he is. He's often fairly quick witted, much funnier than I remember him. As I said Il like being around him. Like Joan it's such a contrast to the way I was feeling about him before when I had to really work to feel fondness and compassion. I could actually live like this forever and be happy I think. I've gotten used to his not being the "adult husband" of old days and having all the responsibility. I'm not ready for further decline. I just wish it could stay like this. WHY WHY WHY? What a dreadful disease. Now when he declines further it will feel such a greater loss than if he hadn't gone through this stage where he's so enjoyable to be around. I'm not ready. I'm not ready.

rachelle, I know what you are going through. My DH (58 years old) has been in denial as well, or maybe it is part of the disease that they are unable to process what is happening to them. I started noticing symptoms last Feb and kept a log for several months. When I sat down to frankly discuss my observations, he would not acknowledge any of it. I enlisted the help of his only brother, because I knew through research that it could be a tumor, or water on the brain - both easily spotted on a CT. I would have felt terrible if he succumbed to either of those and I had not pushed for the CT. I was praying for a brain tumor (an operable one, of course). Alas, the CT was negative. So here I am a year later with my new game plan in hand. I have my physical in April, at which time I will recruit the PCP to insist on a neuro visit for my husband when my DH comes for his own physical a week later (my log is quite long and convincing at this point). In the meantime there is no doubt that my joining him in the boat as he floats down the river of denial has made life much easier for both of us. I try really hard not to use phrases like, "Don't you remember?" or " I already told you that." etc. He is so defensive - little things like that really disturb him. You are right, eventually your DH will not be able to deny the situation any longer. I had some hope of that with my DH just the other night. He asked if I had seen the article about the eye exams that may allow doctors to spot AD 20 years before symptoms. During that chat he was telling me that he went on the Alz. Assoc website, and it was obvious he had been reading the differences between normal forgetfulness and AZ. I am sure he diagnosed himself as normal, but the fact that he went to the site makes me think he is coming to terms in some small way. Is there someone your DH loves and trusts that you could recruit to help convince him that he really needs to get a CT to rule out a tumor? I also promised my husband I would leave him alone of he agreed to go for the CT...would that help?

There are all sorts of ways to get them to the appropriate doctor for testing. (I am not going to call them "devious". Let's just say - "creative".) One of the best is for the PCP (whom you have to convince with carefully documented incidents over a period of time) to tell your husband that he is concerned about something - a brain tumor, a mini stroke, - it's the PCP's turn to be creative. Then the PCP's office sets up the appointment.

Also, the denial by the person with the problem is not always a result of them being stubborn. Very often it is the manifestation of the disease itself. There is an actual part of the brain that is damaged that does not allow for awareness of symptoms. So you're forced into "creative" action. They really cannot see anything wrong with themselves. Thus, it is everyone else's fault.

joang

There are a lot of times during the earlier stages when my husband would go a week or more acting totally normal and I would doubt whether or not he had AD. THAT is what makes this disease so insidious!!!!! Their personality changes are the most hurtful to us (except those who have rages and agression). Until after the MRI and PET scan confirmed the AD diagnosis, I would occasionally wonder if I was right - that he had AD. Because let's face it - we don't want them to have it and we're looking for reasons to doubt!!!!!!

Mary75 and Kitty had the worse financial disasters due to AD that has shared with us here. Protect yourself and your husband. He has AD. Just enjoy the "good" times - they will become much more rare until they go away completely....

We were fortunate with our PCP. When we went to him with DH memory problems he had his nurse make an appointment with a neuro who ordered a MRI. That showed DH had a stroke and several minis and apparently the AD. Since then we have a different neuro who is more interested and doesn't rush you out of the office. The first one wouldn't even prescribe Namenda along with the Aricept.

As far as finances, DH never took care of them anyway so it was no big deal. We did go to see an Elder Law attorney who advised that the savings and the home go in my name which I have done. If DH should ever need a nursing home I will go back to her and have her take care of whatever so Medicaid will pay for the nursing home.

Shellseeker: Oh yes, I so remember the first couple years occasionally thinking and even asking him a couple times if he was doing this to get me to do all the things he didn't want to do. I used to call myself his "cruise director" as he seemed so capable of doing anything he enjoyed while I was working my butt off and worrying all the time. Now though, it is so different. He's different and I'm different and I'm scared to death of what is to come.

I don't have tangible physical evidence on an MRI or PetScan to conclusively say he has AD/FTD whichever, but he was diagnosed early 2007 and with yearly neuropsych tests declining so dramatically and everything else we could test and retest for being ruled out, my hopeful moments are just fantastical thinking.

And yes, I am trying to enjoy these days while they last which I can only hope will be for a long time.

Thanks for the "creative" suggestions, Joan! Mary22033, you asked if there's someone my husband trusts who would be able to share concerns/convince him to go for testing. Yes and no. He is socializing with long time friends less so that's a dead end. There are a couple of family members who've voiced to me the possibility of early dementia but I honestly don't think hubby would "hear" it from them even if they expressed their concerns to him directly. He's at a stage where I can mention something significant and a few hours later I realize it has only registered partially (if at all) with him. so someone could share with him and I doubt very much that he'd grasp it and remember it long enough to follow up on the concerns.

Last year I had a significant health problem diagnosed so I of course shared it with him. Much to my utter dismay he couldn't recall any of the details the next day. So later (when I received the report in writing) I read it out to him and discussed it with him. Still very little comprehension. He can----now-----recall only the general scope of the condition (very basic) but not the name or details. He became upset if I questioned him just so I'd know how much info he'd absorbed. (Fortunately I am not experiencing any health problems related to the diagnosis----just have to be monitored and go for regular screening tests). So that's another reason I'd like for us to get some testing done. To me it's apparent that something is not functioning properly in his brain and as someone mentioned, I too would feel awful if the cause wasn't a dementia but something treatable.

Another factor that has got in the way of pursuing testing is that he does have other health problems so when I first mentioned a few concerns to PCP, the dr figured it was part of his other conditions (which it easily could have been). Then hubby was diagnosed with something else which quite reasonably explained some of the symptoms I was noticing. But that last diagnosis was over 2 years ago and the behaviour and memory issues are still with us. And becoming more pronounced. I am wondering if this is early onset stage or if we are further along. Hard to tell because of the other health problems. One family member told me recently that she noticed changes in my DH past 4 years. But looking back (hindsight) I realize now that some things we put down to other health conditions maybe are part of this undiagnosed possibly dementia???

I appreciate everyone's suggestions re getting referral/diagnosis. I will definitely be doing some creative thinking over the next few days!

(Yes, I realize now----from reading----that people can lack insight into symptoms and changes due to damage in the brain. I came across the term "anosognosia" on this site and did some reading on it. Definitely helped me to better understand what is likely going on with my husband).

I've got a couple of comments.

First of all NO doctor will prescribe Nemanda at the same time as the first dementia drug. They have to get the patient ramped up on the first drug and stable before they will prescribe Nemanda too.

My husband might have had just a stable version of some brain damage and we did hope he would be stable. Turned out that we didn't get that lucky and he has full scale dementia now.

One way to get a diagnosis is to consider the possibility that it is just a stroke and ask for cognitive therapy. That was how my husband ended up at the right kind of neurologist. You can't fool a therapist, and it was set up that she would report back to the family doctor who then sent us on to a neurologist who worked with dementia patients. Another advantage to this was that except for blood work and the CAT scan, she had done all of the other kinds of cognitive testing and that didn't need to be done during the diagnosis stage. And if it had just been a stroke-like situation, she was set up to get him all the kinds of therapy he might have been able to use.