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.

Preparing for Future Madness

WARNING: THIS WAS WRITTEN AFTER ONLY A FEW HOURS SLEEP SO IT MAY NOT MAKE A HILL OF BEANS OF SENSE TO ANYONE BUT ME.

Now that we four kids have the legal right to look after our mother and are no longer at the mercy of her husband, we find ourselves exhaling for what feels like the first time in two years. And, we laugh. We laugh because the absurdity of these most recent months is comic now that the shock and fear and urgency to act are no longer crushing the breath out of us. We laugh because stress and anxiety and tension and uncertainty all demand a release and laughter is better than hysteria. And, to be honest, we cannot always tell the difference. But, mostly we laugh because we are scared, scared of what comes next for Mom and for us.

Our mother was sixteen when she started having children and while we are sure dementia was setting in two years ago, it could have been as early as three. So, if you do the math, the oldest of her kids could be facing dementia in as few as thirteen years. THIRTEEN YEARS! Do not be buffaloed by that “it skips a generation” baloney either because Mom’s mother also suffered from dementia and developed Alzheimer's.

What will my three sons do if I get dementia at 64 or 65?

Scary stuff. Not as scary as my nightmare about waking up in a coffin but still scary stuff.

We have no idea which of Mom's kids, if any, might develop vascular dementia or Alzheimer’s. Maybe all of us. Maybe none of us. Maybe only the girls. Maybe my brother since he is the oldest.

Blueberries. We need to eat more blueberries.

But . . . what if I do start hiding my rolls of toilet paper all over the house? What if I begin to think my grown kids are coming to the house and stealing my shoes? And, what if the voices in my head and the shadows in my vision become my reality?

We all need to talk about things as we get older but with the threat of memory loss hanging over heads, it is imperative to:

1. Talk to our families and tell them what we want. Nursing homes, assisted living centers, retirement centers, independent living, castle in the back yard with a bat-pole, etc
2. Look into life insurance and burial plans. I want to be buried with a live cell phone that has a portable hot spot. You know, just in case that coffin nightmare is a premonition.
3. Make sure our family has photocopies of our drivers' license, social security, and insurance cards in cases of emergency. Thank goodness I copied my mother's ID and insurance cards two years ago because her husband has still not turned them over to us. 
4. Once we tell everyone where we want to live, how are we going to pay for it? Do we have IRA's and retirement funds that will pay for it? My kids need to thank their grandmother because up until we daughters had to find a way for her to live on $1800 per month, I thought I would just blow through all our money and if there was no money to pay for my care when I was finger painting with my own poop, who cares? It's not like I would know the difference. 
5. Consider long-term care insurance to cover the cost of private care (memory care is expensive) and our own income/savings/social security/medicaid may not cover it and I do NOT want to live in my son's converted garage especially since he may forget it's a converted garage and park his Honda in front of my giant flat screen and I do not have a lot of faith that any of them will build me that castle in the back yard. Or the bat-pole.
6. Execute a Last Will and Testament and make sure our kids and spouses know where the executed document is and what it contains. I'm not doing one of those surprise readings like in television where the attorney announces who gets the Rolls Royce and who gets the Bentley. My three sons will all know ahead of time that what's left of my estate will be split 80/10/10 depending on which kid sucked up to me the most during my lucid years. Or a sack race. I have not decided yet.
7. Do we want to include a declaration of guardianship in the Will should it become necessary later? I may need to keep this part a secret from my sons. None of them may want to take on this daunting responsibility.
8. Do we want a Living Will that discusses choices we want made on our behalf should we be unable to make them or will those decisions be left up to our families? Yes, because I want to be an organ donor but only if after THREE DAYS there is no answer on that cell phone.
9. Execute medical and durable powers of attorney so our kids can make us go to the doctor when we start going to the mailbox in our birthday suits.
10. Find a safe accessible place (safe deposit box, fireproof file cabinet) for all critical documents like insurance policies, our Will , powers of attorney, and records our family will need in the event of our incapacitation or death because, otherwise, we will hide these documents in hat boxes and refrigerator drawers and hey, that's not a half bad idea because if the attorney is reading a Last Will and Testament that's been in a drawer full of onions, everyone in the room will be crying and I'll look very popular.
11. Talk to an attorney about our specific financial situation to see if there are other business issues we need to resolve because we, ourselves, are not attorneys. Well, unless we talk to my nephew who actually is an attorney.
12. Get regular check-ups and be receptive to preventive care and treatments. (Missy, this means you really should consider getting one of those V-Steams with me. . .)

And that's about all we can do.

And eat blueberries.

One day, my mother wanted to know why I stole the gold flatware that her friend had given her to hide until she needed to use it to fund her escape from Afghanistan. As a writer, I make up stories. But I sure hope, hope, hope that if I lose my wits and live in my imagination, it's a world of dragons and fairies and pirate ships and mermaids, NOT wars in Afghanistan.