Ok, I am a nerd...a mechanical engineering, everything needs to be 1.2.3.4, follow a known course, have a root cause, can be calculated and understood. Yes, I can drive myself crazy. Especially with trying to get my arms around my wife's diagnosis of early-Onset Alz. three years ago, she is now 56. For the most part, she seems very normal, but has her times and I do see changes. But the changes are so fleeting, coming and going without any pattern. Most folks would say the diagnosis was wrong based on what they see...could they be right? It seems like every time I speak with our social worker about something I notice with Teresa, her response is that is normal...so far, everything is normal! Is Early-Onset Alz. so different with each person that nothing can really be nailed down...is it that random? She has had three yearly testing periods (August) and each time she scores lower...but I sometimes don't notice differences. Here are things I see now:
*Past memory is good, short term/very short term memory is a problem area. *Financial decisions are not great. But she can count and handle money fine. *Impulsiveness in decisions without thinking about consequences. *Obsessive behavior in a few areas tied with some compulsiveness...but not way out of hand. *Gets very tired daily if she is active. *Have had (2) episodes of delirium I believe, after speaking with her doctor and social worker. Short episodes of a couple hours each. * Developed repetitive finger movements in both hands if at rest...while in use it goes away. *Emotions seem to be very fluid and easy changed. *She was a very strong-willed (type A) woman...she has changed into a very mild-mannered, passive person. In some ways, she is much nicer than in the past.
Well, that's my rambling. I'm not sure what I am looking for, except to perhaps learn from you who have gone before. I am open to any feedback at this point, so don't hold back.
Welcome ozarkhiker. I know one comment that has always stuck with me "if you have known one person with Alzheimer's then you have known one person with Alzheimer's". Of course there are fence posts along the way but everyone's journey is individual. Another conversation that has stuck with me I started awhile ago, "when did it begin". In hindsight there were behaviours many many years ago that just seemed so out of character they were hard to understand. Many here have suggested they had the same experience were these behaviours early signs or just part of the personality? Who knows I tend to believe early signs.
I know I tried to keep our feet moving tried to stay as normal as possible, active socially travelling etc feel almost like I was trying to outrun alzheimers. In a way I think this was good we had a great few years. we never tried to hide what was going on and as a result we still have a number of friends who although most not close geographically are always there. Lisa is now 60 was 56 at diagnosis but it took a Number of years to get that diagnosis so we were well in to the middle stages when we got it. Now at the later stages our travelling days are over and our socializing is becoming much more limited. Physically still possible but I find it just too difficult now. That is how it has worked for us but remember there is no one right way. This site has also taught me it is ok to be frustrated, it is ok to be mad, it is a tough journey and we all just try to do the best we can.
So not much advice except enjoy your time while you have it, don't beat yourself up if you get frustrated, and keep in touch on this site great place to vent and to get support. Good luck!
I suggest doing research on Frontotemporal Dementia (FTD) and Lewy Body Disease. The types of dementia are often misdiagnosed and much of the medical community is ignorant of the rarer forms of dementia. FTD is often first diagnosed as Alz. or example, the memory problems you describe could be more from lack of attention than inability to form new memories, which would be more consistent with FTD. Impulsiveness and poor judgement and problems with procedural memory also are indicators of FTD. Hallucinations are a classic symptom of Lewy Body Disease. To some degree the dementias overlap and become more alike in the end. But a solid diagnose will help guide medical decisions and how you handle it.
Do you have Power of Attorney, Durable Power of Attorney, Medical Power of Attorney and new wills set up? Have you planned for the future with an Eldercare Attorney?
Thanks for all the remarks, they are appreciated. It really is a day-by-day journey! I have been a pastor , full time for over 25 years and stepped away to just go to church with my wife after he diagnosis. Because of my background and desire to connect, I thought a caregivers group and memory Cafe would be great in our town and region. So I attended the required classes and went to the last one...all pumped up to start a group. That evening, while talking with my wife about my last class...she very firmly told me that I was not a caregiver and she does not have Alz.!!! HaHa...so not sure how to proceed at this point as I ponder her reaction. I have a feeling, if I broach the subject again in a couple weeks, she'll say "go for it" and wish me luck. It certainly is a roller coaster. I do believe she presented with symptoms in her early 30's. Of course she was pushed to a Psychiatrist who diagnosed her as bi-polar II and adult ADHD. We operated under that umbrella with a myriad of medications for all the years. Our primary doctor saw more and suggested a visit with a neurologist at a senior center of a large/regional hospital, he specializes in Dementia, etc. After testing he offered his best diag. as Alz. with follow-up visits to validate or move to other Dementia.
As long as you mentioned bipolar, FTD is often misdiagnosed as bipolar. Of course someone can have both bipolar and Alz or bipolar and FTD. I also feel that my wife was showing signs of FTD in her 30s.
It is sad when we think back and knew something was wrong but had not heard of dementia. My husband was showing symptoms when in his early 40s and I thought it was just bad behaviour. Our children thought the same thing for many years.
I was the type that I preferred doing things myself vs letting the kids help. I had no time for them making mistakes or being slow. In the 8+ years since his diagnosis I have changed dramatically in that area. I still get frustrated and upset which usually results in me getting the worst of it, but I am overall doing better at 'chilling' out. It is even harder when they can do something fine one day (or hour) and the next have extreme trouble. I think m hardest is him not remembering so each time is new.
He is going to day services 3 days a week. I thoroughly enjoy the break. Even if I just sit at the computer it is still enjoyable. I am finding though with him not here I am more inclined to do things.
PaulC - Thanks for your input it has been very helpful. I scheduled a meeting with one of her doctors last week and we spent about an hour talking, it was great. Sometimes it is easier to talk without my wife being there. I wanted to meet before her yearly testing/evaluation in July. What you stated about FTD got me digging and reading...it does fit somewhat better or even the lewy body version, at least in my mind. What was interesting is that one of her neuropsych. doctors is leaning the same way and has been for the last couple of years. It would explain the emotional and mood changes, OCD issues and finger movements. Also, the social worker we also consult with has been perplexed a bit by my wife not declining as rapidly as they usually see...plus memory issues are there, but not at a high level. So I am sure we have some mixture of dementia's or a completely new diagnosis may be at hand. Thanks for your help.
Most of my important discussions with neurologist and psychiatrist have been without my wife. I would always email new diary entries and a summary before any meeting. I am glad I could be of help.