Anyone else having trouble loading astromart pages?Posted By Rod Kaufman |
I'll just say that the manner in which you've approached all of this is an outstanding example for those who may find themselves in a similar situation. It is truly comprehensive and commendable.Originally Posted by James Lacey
My wife was first diagnosed about 10 years ago, but honestly, it could have been done even earlier. We got her on all of the maintenance medications that are available right away (memantine and donepezil), but those can only do so much, and she has progressed pretty rapidly in the last year and a half. It's not correct to say her short-term memory is bad; it's more accurate to say it doesn't exist. She could not live on her own even for a day at this point. If something happens to me, she will have to be institutionalized almost immediately. I have prepared for eventualities and imagined potential tragedies as best I can; all the necessary estate planning documents are in place. However, you can only do so much, and in the end, you have to let family members know what your wishes are and hope they step in and take over if you are somehow no longer available. All of our assets will be placed in a trust for my wife's benefit upon my death. Two of our children will serve as trustees. Beyond that, and shopping around for institutions you like and communicating those to your family, there's not much else you can do to prepare.
Most of our kids tell me it's time to find care for her, but I'm unable to do so as long as she still knows who I am and is not a danger to herself or me. She is not too much trouble to take care of, although she does need help with dressing and hygiene every day, and is wholly unreliable and unable to stay on task for even the simplest things. The good news is that she has no other health problems and has shown no significant personality changes, such as combativeness or anger. Her father never did either, and I suspect she will follow a trajectory similar to his. It does drive me crazy from time to time, I'm only human after all, but I would say that overall, we do pretty well. Her neurologist tells me I'm doing a better job than people who are trained to take care of these kinds of patients. But I'd be lying if I said it's easy.
You hear about all these new drugs that are being introduced, such as Aduhelm, Leqembi, and a newer one called Kisunla, which reduces the amyloid plaque buildup that's causing the problem. Unfortunately, she can't use any of these because of her APOE e4/e4 genetic mutation. The genetic mutation already puts her at higher risk for stroke, and the use of the medications increases the risk of stroke as well, so the two coupled together are a recipe for disaster. What's worse than an Alzheimer's patient? An Alzheimer's patient who has had a stroke.
Listen carefully to the ads for the drugs like Kisunla, and you will hear phrases like "...can cause Amyloid-Related Imaging Abnormalities (ARIA)..." and "Some people have a genetic risk factor that may cause an increased risk for ARIA." These are the statements warning about the increased risk of stroke while using the drugs, and that the APOE e4/e4 mutation makes the risk even higher.
You can only have the APOE e4/e4 mutation if you inherited a bad copy of the gene from your father and your mother. So, to say it's a stroke of bad luck (no pun intended) is putting it mildly.
