I'm glad I started that phrase and that others agree. Yes dementia is a fatal disease. I believe that is why so many docs would rather not treat it. On the other hand we have the ones who want to use our loved ones as test objects. I know that research is the only way to learn and cure. However when our LO's have reached the point of no return it is our duty to protect them and refuse procedures and treatments that have no predictable outcome.
My DH has an MCI diagnosis but I have decided after reading all the posts on this website, not to subject him to any testing beyond what is necessary. Right now he needs more tests to confirm progression (AD or whatever) but once we have that, quality of (our lives) for the remainder of his life is what is important. I agree with so many others that once the quality is gone, let nature take it's course. So absolutely CG's unite, I will stand up to the repeated testing and protect my DH from the stress and agravation. Decisions will be based on quality not longevity. Just my 2 cents.
I too have decided not to have anything more than is absolutely needed for Mac's comfort. He has a way to go before things get bad but I really don't see the point in drawing this disease out when it will win in the end. He will be 80 soon so that is another reason not to get into tests and procedures. He said himself last week when the neoropsyc wanted him to take the 3-3 hour tests that he took last year, he didn't see the point in going through them again at his age.
After his hospitalization and the neuropsych testing that ID'd his Vascular Dementia, and 3 trips to the hospital int the 6 months after that because of suspected (semi-confirmed) TIAs, the Psych Dr. he was referred to started pushing for more CAT and MRI testing this year, along with a sleep study, colonoscopy (Med. induced constipation the reason),and making more med changes. I checked with our PCP regarding all this, and consulted with a different Psychiatrist who specializes in Alss and memory disorders. Their consensus was that testing should be event driven. Chang4es are happening but unless/until something significant happens,more tests aren't going to show anything we aren't alreeady aware of. Also, wewill weigh the matter of other testing (sleep) on the facts that it will be extremely hard top get him through the testing and if it shows apnea, he'd never be able to deal with the bi-PAp or C-PAP used in treatment, so why pursue it? If he needs testing for an event (UTI) we do it. I think I got lucky to find 2 Drs. who have a good handle on this. Plus, the Psychiatrist told me the most valuable tools he has for treating his patients, are their caregivers. He said they are the ones with the most valuable information on his patients because they are on the frontlines with it everyday and all day and know what's "normal" or "not normal" at that time. Ron's going to be 66 in October. I don't believe a boatload of tests are going to change what's happening or how long it will take. From what I've learned, there is no stopping this, and we are already doing just about all we can to impede it--protect his vascular system. My focus is on trying to keep his (our) remaining time as good as it can be.
Good for you Carosi. If it wasn't for this site I doubt we would have the strength to do or not do what we think is the right choice. Caregivers unite!
I agree that tackle the testing issue as needed only. i feel i have a backup system here to come to when things get tuff. sharing our fears and joys together makes it all so much easier to endure knowing somewhere somebody is going to lend an ear and a word of comfort. only we CG know whats going on. its a downhill struggle none of us is going to win but knowing we are united on the front is a great support- divvi