Not As Bad As It Sounded

Apparently Substantial Decline is a phrase established by Medicare and to which an Alzheimer’s patient must be shown to conform if they are to stay on Hospice. Since Alzheimer’s patients often plateau after a decline and can then linger on that plateau for a while, Medicare requires that Hospice show a substantial decline in order for the patient to stay on Hospice care. Thus, when the nurse told me that mom is in a substantial decline, she didn’t mean it by my standards, or yours, but by those outlined by Medicare. In other words there is a measurable loss in arm and leg size reflecting a decrease in muscle strength, there is a lessening of her desire and /or ability to eat food, there is a decrease in her daily fluid intake and her morning blood sugar readings are higher than they had been due to much of the above and there is an increase in her sleep patterns; these and a few other such items qualify her condition as declining by Medicare standards. So… I’m breathing a bit easier and feeling less despairing than I was before I talked with the nurse on Tuesday.

If she should plateau and no longer be seen to be declining, then Hospice will try and qualify her for the program under another of her ailments so that she can continue to get the in home care that she has been receiving and which is so helpful to us all. It sounds to me like there are several categories under which she is eligible, but Alzheimer’s is the most prominent. Thus, it is the one under which they qualified her for the Hospice program.

On another topic, I feel like I have a two year old under my care. It seems the one word that she still knows consistently is “no”.  I ask her if she is ready for bed and she tells me, “No”. So I ask her, do you want to stay up a while and she tells me, “No”. I am actually trying to default to seeing how she reacts when I start doing something such as removing her blanket or getting her more tea or food. If she reacts positively then I know which “No” she meant and proceed. If she reacts negatively, then I know which “No” she meant and stop what I’m doing! It makes things interesting sometimes, but she can still let me know what she wants to do and I can still obey, as a dutiful daughter should!

She is talking in her sleep more often now. She is obviously talking to people she loves in her dreams. I’ve heard her call my siblings names more than once. One time, when she had been dreaming and wakened to see me sitting across the room, but not too clearly, she called me by her sister’s name. So family, if you think you have been forgotten, know that you have not been. She still remembers each of you quite well; she just can’t place you as easily in her waking world as she can in her dream world. I really think that her brain functions still on a subconscious level, even though in her waking, conscious world she can’t bring things to the surface as well.  Of course, I also got my psychology degree from a Cracker Jacks box…

 
Again, let me finish with, “she is happy, she is comfortable and she is well loved.” So all is as it should be.