I know that we are not suppose to put a lot if stock into testing and stages, but. My DH does research testing every year. Last year he scored 18 a drop of 4 points from year before. This year he scored an 11 a 7 point drop in a year. Research shows he is going into stage 7. Severe Alzheimer's. they tell me not to use logic or try to reason with him. I know that. But how do you deal with things that come up. I know I m the one who has to make decisions. But he gets angry. Theatens divorce and walking off. I am calling doctor to get seraqual. It is time. Sorry need to vent. I have been dealing with this disease for almost 10 years now. I am tired. I knew he was there but to get confirmation is another blow to the stomach.
Jackie - I know with my hubby that one year he scored 25 then the next year it was 14 and then the year after that it was 22. I just said 'enough' no more testing. It depends on the day they are tested and how they are feeling and who is doing the testing. I have him on some good meds to keep his moods stable. Well more stable than what they were.
Yep diagnosis was in 2007 but he was having problems long before then. I thought at stage 7 they had lost speech, walking, and most all other basic life skills? If he can still talk and threaten divorce and walk off wouldn't that be the beginning of stage 6....I'm confused.
Jackie, I've said no testing now as well. All it does is make me sad and want to cry. Besides, all he dr is using is the MMSE and that truly isn't a good measurement. For example, DH tested 11 2 years ago, last year 9 and this year 14. The doctor tells me we're doing something right and is impressed with the score increase. Amber is right- it depends on what kind of day they're having, how they're feeling, how they feel towards the person testing them, etc. I think it is very unreliable.
Amber according to the MMSE scale, a score of 10 or less indicates "severe" dementia. When my husband scored a 9 he could walk, talk, follow directions, assist with dressing, was not incontinent, yet the doctor insisted on telling me he was in the severe dementia stage which equates to stage 7. So now that he's scored a 14 this year did he get better? Of course not. The MMSE is just an unreliable test yet they keep using it.
LFL - I rely on the Fisher Center scale....I found it more detailed and I was able to follow hubby decline better...he is definitely stage 5 to 6a but can still dress himself no problem....as long as I don't interrupt him. No sign of incontinence but if he started I would have toileting schedule made up for us to follow until he got worst.
I think it is the old saying "Once you seen one person with alz, you've seen one person" I try to keep his life as normal as he is able to function and will keep doing this until he is far enough along that I can get him placed.
I know that they can have bad or good days of testing. The only reason we do is it is for research. He has participated for 6 years now. He has stayed the same for a few years and declined on his scores the last couple if years. He has never gone up in his scores. I do believe he is late stage 6. I do look at Fischer scale also. He has trouble getting words out forgets who people are and does need assistance in dressing. He can still feed himself. But eats slowly and could not fix toast. He has had some incontinence problems. Just not consistently. So I know he could stay this way for awhile or move on soon. He wanders at night. He walks slow and shuffles his feet. He does have balance problems at night. Sometimes I have to help him into bed. When I say he says things and walks off, I don't mean like we would. But, I do know that it makes me feel like I am not the crazy one when his testing came back lower. When it came back no change, I was like that is not right. He is worse than that. I know it sounds bad but it is like confirmation for me that I am not crazy he is worse. Does that make sense?
Gave up on testing years ago... An absolute waste of time! The results were always the same and 100% predicable: The MD got to bill Medicare DW's score declined I was anxious before the tests and became depressed upon seeing how poorly DW was able to perform the tasks Conclusion, your wife is declining. I always felt like yelling, " That was a piercing glimpse into the obvious." Do I care what stage? The label is meaningless. Getting DW ready for bed this PM and into the shower in the AM is what is relevant. Alzheimer's is a progressive, Incurable disease for now, all we can do is mange our LO's symptoms effectively, keep them safe in a loving environment, free of discomfort and hope we can endure
Jackie - yes it does make sense....unfortunately we have only what you have written to figure out what you mean. I guess that is why we write more than what me have too to try and be clean with what we are saying.
Wish we could all get together in a big room and have a 3 day conversation. It would be cool to be able to hear and see each others voice. accent, tone and gestures.
I am with Marty's opinion. Once the dx is finalized what's the point of the test? There isn't a cure so why put them though it? There isn't a medicine to cure it. Just give them the best quality care we can.
Amber. I too wish we all could meet. Even though I have a supportive family and I know they try to understand all that I go through. Only you and everyone here really understand. It is a big help. For the longest time I just came here and read post. I look at the site numerous times a day to see if someone has posted. It is my safe place. Thanks for responding.
jackiem29 - I thought your post made perfect sense. Maybe it is because my DH shares some of the same behaviors. If your DH has been enrolled in this research for 6 years, then I guess its important to keep up with the testing - maybe something important will come of it some day (probably too late for our LO's. I don't hold any stock in the testing, and I don't think my hubby's GP does either. She gave him the test the first time she saw him, but since then, she reads the notes I give her that document his behaviors, and she goes with that as a reading of what stage he is at.
And I don't think 3 days would be enough time for a conversation if we were all to meet! :-)