Five months ago, we moved Mom to an AL facility with more care when she was asked to leave because of minor anger issues. About the same time, her doctor said the memory meds were no longer effective, so we gradually took her off them. Now, in just five months, my mom's AD has progressed to the point that she cannot dress herself, get herself to the dining room, converse with any lucidity, and even often calls herself by her mother's name. Now, I'm feeling really guilty for taking her off the Donephezil and Memantine. Did my decision cause an increase in brain atrophy that the drugs would have at least delayed for some time? Should I put her back on the meds--would that reverse the damage (probably not if it's from brain atrophy), but would it help neuron connections? Would her five-month slide into late-moderate/early severe stage AD have happened if I had kept her on the meds. It's really nagging at me and making me feel horribly guilty.
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You followed doctor’s orders and have seen a negative transition, but with these drugs and our LOs, there is rarely a smooth, direct path through the symptoms of the disease.
Don’t allow yourself to feel guilty UNLESS you consciously chose a treatment that you had expected to harm your LO. It takes too much of the energy you are already using to stay ahead of this awful condition without allowing guilt to enter decision making.
Love her, learn all you can about what, if anything, causes positive changes in her condition, no matter how slight, and take good care of yourself as well.
You are asking the right questions. Trust yourself.
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He became completely dependant like an infant. He went about 3 weeks off meds before we put him back on immediately. He didn't recover his prior levels, but he can almost dress himself again.
I think these meds help patients more than others, and the ones that benefit can't seem to be taken off of them at all without dire consequences.
I would ask to try going back on them to delay further decline, and maybe recover at least something to make their life more meaningful.
Either way, the rate of progression of ALZ is unpredictable, some people live with it for years and have a slow decline, others have a much more rapid decline. Please do not feel guilty because Mum's decline has been rapid.