My H has had so many and they are coming up as eligible for insurance in a couple of months.
Another MRI, another PET, another neuropsych eval? I have taken it upon myself to draw the line at NO MORE lp's. This has caused some discussion and I am glad I have poa and can turn on my inner ----- when I think I have to. How far have the lesions spread, and/or what difference does it make as this dementia takes over. It always wins, right?
I've been thinking about this. I notice little difference from day to day unless it is a crisis-falling down day. But when I look at it from year to year, since 2006 especially, what he has lost no test can measure.
Sorry, part question, part rant. He has been up and down every fifteen minutes for the last six hours.
I think it's best to keep some kind of a journal to document our spouses decline. It is too easy to not notice how much they are declining because we're with them 24/7 and it is usually a gradual thing. Granted, sometimes there are dramatic downturns and you notice that, for sure, but, most of the time, not so much. IMHO, anyway.
In 2011 we enrolled in some clinical studies at NIH. Jeff's regular neuro had referred us to a doc there who was particularly interested in studying Alz variants such as Jeff has. By this time I really was steering and powering the entire ship even though, in concept, he agreed with the idea that contributing to this research is a good thing.
But it was obvious by 2011 that he wasn't "with it" enough to really be aware that he was doing anything other than really getting tired out. ESPECIALLY when it came to the cognitive testing part of the data they were collecting. (there were also 3 different kinds of PET scans.) Anyway, the cognitive testing was clearly the most difficult, defeating, exhausting part, and I made an easy decision that we were done with that.
We completed the studies, because it was kind of our last hurrah as far as contributing to the database goes. I felt a little ethically conflicted, actually, asking him to finish, but I knew that he'd recover quickly and feel good again once the day was done and we went for dinner.
After the testing when DH was Dxd with the Mental Illness, and then all the tests that resulted in his VaD Dx, followed by the tests repeated 3 times in 6 mos. after ambulance trips after TIAs (all 3 times nothing showed), we drew the line. No more tests unless event driven. If he can't/won't be able/willing to comply with the prep and testing, and won't be able/willing to comply with the treatment why put him through it. Example: Sleep test: Cooperation with testing very questionable. Looking for Sleep Apnea. If so, C-PAP or BI-PAP machine worn to sleep at night. Can he/will he cooperate with wearing it? Highly unlikely. He's up and down repeatedly--urinary issues. Won't be able to put mask on himself properly. Mask will be like a toy. Another point--if the findings of the test pointed to surgery and we know anesthesia is a big problem with decline, do we really want to know? Whatever Dementia is already terminal, if there were another condition develop which took the LO sooner, quicker, might that not be a kind of blessing?
That is the truth Carosi...I can honestly say there would be little point in any kind of diagnostic test designed to prolong life because of some other kind of ailment.
they have given him the MME on each of his 4 visits. He scores waaaaayyy worse than the first one. And.. I think he really hates it, and does not try hard enough.
(When the Dr. says the 5 things to remember, oooohhhh,,,I have a hard time with that one too lol. Now I try harder...)
coco - I can never remember them either, no matter how hard I try until later that is.
Carosi - cpap: my husband wears one and he makes it so tight it takes most of the day for the indentations to leave his face. He claims any looser and it will come off. I think having it has helped some with the memory problems in that he gets good sleep, but how much longer he will wear it who knows. He is so obsessed with making sure he takes his vitamins, supplements and galantamine and using the cpap I don't know when it will stop. He will lay awake watching TV with it on. I can say I do not miss the snoring.
My H will agree to almost anything his N suggests. Okay, in terms of MRI/PET even neuro eval. I agree, the neuro evals are defeating. I don't know if he understands it at this point but I recently had to gather for a different insurer, the former evals. They are heartbreaking for me to read. H has no interest in them.
If he does not have to deal with it directly, it does not exist. I sometimes wonder, how does he think the bills are paid? Perhaps I should not complain; previous to the last couple of years he would subscribe to newsletters on how to improve investing. (At $1000.00 per year and it was up to me to reconcile these kinds of things.)
But, and a big but, neuro suggests day care and really ALF and with great conviction, H says no to that!
Charlotte---A cannula is a toy in DH's hands. Under his nose, on top of his head, under his chin. He doesn't snore--sleeps mostly on his side. And he's pand down at least a couple times a night --bathroom--if no other reason.