Stages of Madness

Because who has time to blog, that's why! And do people even read blogs anymore? Actually. it's more like I've been AWOL from blogging because having a parent with Alzheimer's is a full-time, all-consuming, gut-wrenching, sleep-stealing occupation.

But dang-it, I know things.

My desire has been to preserve my mother's dignity but the  more people I come in contact with who are floundering in the legal intricacies of senior adult care and who are suffering with the feelings of utter isolation and hopelessness that come from thinking your parent is the only one who eats her own boogers, walks to the dining room naked, or uses his penis as a Thompson sub-machine gun to open fire on Nazi soldiers every time a nurse walks in. . . well, dignity be damned, it is like cold water on a raging fire when somebody  who has been there and done can honestly say, "I understand."

So, let's get real.

Whose dignity have I really been protecting? At this "stage", the mother I knew twenty years ago - -  even twenty months ago - - is gone. In her place is an innocent but volatile childlike person, an infant in a seventy-year-old body. She is a person wholly unaccountable for anything her former self did, said, thought, or neglected to say, do, or think.

So, what is this "stage" my mother is at anyway? I want to define it. I want to label it so when people ask me, I have a definitive answer like, "she has Stage 3 Alzheimer's and I am so thankful for your prayers."

But I cannot do that because there are no definitive stages. Oh sure, we use them. That's what we do as people. We label so the part of our own brains that demands answers is satisfied. But once we satisfy the "I need a definition" part of our brains, the "I demand a solution" part kicks in and the result is frustration and disappointment because we began on a false premise.

And,  we make poor decisions based on that false premise:

"That stage was supposed to last at least a year or two. Why did it only last three months?"
"He is not dying. He is still only stage 2."
"This stage will last several more months. No need to research assisted living yet."
"We are not calling Hospice to help her a few hours each day. She's still only Stage 1." 

Knowing what CAN happen and what WILL happen is good but putting a timeline on it is useless because there are no definitive "stages". There are only guidelines.

Some support groups say there are three stages while others say seven. As  I've mentioned before, the statement "if you've met one Alzheimer's patient, you've met one Alzheimer's patient" is probably the most accurate statement about Alzheimer's I have yet to hear. My own opinion is that every single person will experience dementia differently and nobody can say this "stage" or symptom will last a certain amount of time and that one won't.

Imagine a staircase. The very top is perfect mental and physical  health. The bottom is the opposite. And, let's make it a spiral staircase because that is what it feels like. You with me? Spiral staircase descending into utter loss of memory and body failure.

Each individual will undergo changes at a different rate and, from what I have seen, it is nothing like "step one, then two, then three, etc." as a person slowly goes down that staircase.  Nope. Nothing like that at all.

Let's say your father is on the fifth step from the top right now. Life isn't too bad. He improves and goes up a step or two. Then a setback sends him down one or two steps. This goes on and on. Better one day. Worse the next. Today, he can do something he could not yesterday but tomorrow, it may be gone again. Generally, though, he is hovering around that fifth step.

Step five is your reality.

Then, one day you realize you haven't seen that fifth step in a week or two and you want to fix it. What can we do? Increase this medication or decrease juice? Change bath routines. Buy clothes that do not button. Whatever. You gotta try. You have no choice. But while your father is in a perpetual state of getting a little better and then a little worse and then better again, you are now hovering around the ninth step and you will likely never see that fifth step again.

Step nine is your new reality..

No lie. This staircase sucks. Are the steps on the staircase "stages"? Probably. But they do not fit on a chart or in a list because, while my mother may not be able to use a fork on step five, your father may not lose that ability until step nine.

The randomness of it all is maddening.  This symptom for one but not the other. Sometimes progression is fast. Other times, slow. Severe for this one. Mild for that one. Only dementia for your mother but dementia and Alzheimer's for mine. Mild memory loss here and major body function issues there..

No doubt, it is madness. If you have a loved one with dementia or Alzheimer's, my reality and yours are not the same. But we are both on a staircase. Your staircase is different than mine. Your steps are different and you move about it differently. Your staircase probably even spirals differently. But we are both in a perpetual state of trying to push somebody back up those steps, even if only a step or two, knowing full well we will never again reach the top of the staircase.

That, for me, is the most maddening part of it all.