Bit by Bit

The thing one must understand about Alzheimer's is that it is a terminal disease.  That sounds like a no brainer, yet the disease steals Mother in such tiny bits that sometimes the the major change is upon me before I realize it.  She has ups and downs, good weeks and bad weeks, days of fear and days of joy, but  I realize that my definition of a good day has changed.

It used to be that a good day was one where we could have an actual conversation, be it ever so brief.  Now a good day is a day when she smiles.  It used to be that a good day was getting her teeth flossed and brushed every day because she wanted to have a clean mouth.  Now a good day is getting a few of her teeth flossed once or twice a week because she fights the whole process.

So my sisters and I have to make choices.  End of life choices, although the end of life might be years away.  Many families have to make gut wrenching choices about care and treatment, but for many that process takes place over a few hours or days or weeks.  With Alzheimer's, we make those choices over and over and bit by bit for years.  We have to make a series of gut wrenching decisions, and each one seems to be worse than the previous one.

First taking the car keys way.  That was difficult, but looking back, it was a piece of cake.  Getting Mother to the home was traumatic for everyone because she went kicking and screaming - literally kicking and screaming.  That was just the beginning.  Now we face the difficult choices of stopping  or changing some of her treatment, but that too will come bit by bit and with each decision comes gut wrenching uncertainty.  Even though we consult with the health professionals, we wonder if we are making the best decisions for Mother.  It is difficult.  We must do it; we just have to do it over and over and bit by bit.