I discovered this site some time ago . . . read posts for many months before posting any questions and comments. Some of you may remember me but it's been some time since I posted anything. When I first shared, we had no actual diagnosis for my DH. Family dr thought it could be start of dementia based on several behaviors. A close friend (whose husband had early onset dementia) felt that it likely was although my hubby's "symptoms" didn't fit alzheimer criteria. I wondered if it was FTD but was somewhat puzzled because things seemed to ebb and flow somewhat. Family members voiced concerns but at other times, he seemed okay. Was this part of beginning symptoms or what?

Hubby has had a couple of other significant long term health problems that while relatively stable, were still causing some other symptoms. He hadn't seen a specialist for some time (as he felt he was fine----a reflection of lack of awareness). Last summer while we were away, he had some chest pains. Wouldn't go to a dr at the time and the pains subsided but I (along with our daughter) insisted he visit family dr once home. I think hubby was surprised at the immediate follow up tests and referrals and each doctor told him in future to go to emergency or call 911 in future. Tests results showed no heart problems. Earlier in the year, I had spoken to our GP about hubby seeing a rheumatologist again because I wondered if the cognitive problems were related to one of his other health problems (scleroderma). GP agreed and referral was made. Later last year (following the summer chest pains), we saw the rheumatologist for the second time and based on test results, the diagnosis changed from just scleroderma with some rheumatoid to mixed connective tissue disease (as hubby has some lupus involvement).

I was fairly sure that people with lupus can have cognitive involvement (brain fog) so looked it up when I got home. Sure enough-----yes. Some of the symptoms include confusion, profound fatigue, difficulty articulating thoughts and feelings or communicating socially, memory impairment. Described what we've lived with for some time. However, unlike dementias which over time display a downward decline, this cognitive decline comes and goes. Which explains why there are times DH can be quite with it and other times (especially when tired or stressed or in situations where too much is happening), he struggles with cognitive symptoms.

So . . . I've continued to check into this site but haven't felt quite like I belonged as I really don't think what we are dealing with is dementia. However, I do want to say thank you to all of you for sharing so openly as I've discovered so much helpful information on how to respond when DH is struggling with confusion or communication problems or memory problems. Thank you also to Joan for starting this site-----not only do I find it helpful, but I've referred a few people to it as well. And a postscript: the rheumatologist figures the chest pains were likely pericarditis which can flare up with what hubby has . . . he had similar symptoms many years ago but nothing again until last summer. This specialist is scheduling regular follow up appointments and always tells us to call if anything comes up which is reassuring. He has suggested a neurologist referral for the cognitive symptoms but at this point, hubby is reluctant to do so as he feels he nothing is the matter. So for now, we are doing okay and I at least know if symptoms get worse, then a referral can be had.

To rachelle and anyone else, we are all here because of "dementia". The confused difficult to deal with behaviors. This is one thing that we all share.

The many differnt diagnosises only help to predict the more specific types of behaviors that we can expect to have to problem solve and how long until we might get a 'resolution' to the entire situation.

Alzheimers is the most common dementia and so it gets the most attention around here.

But if you (or anyone else who might be lurking) ever need some ideas on coping with the issues of dementia in a marriage, then this is most certainly the right place.
good luck to you.