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.

Madness on the Move

Albert Einstein said that the measure of intelligence is the ability to change. I don't know if the deterioration of cognitive brain activity due to dementia and Alzheimer's can be called a loss of intelligence, but I do know that change is not something a person living with dementia can readily adapt to or accept.

Change is loss.

For our mother, what a difference six months makes. And what a difference it does not.

Mom has  moved into a new facility and so far, it's utter hell.  "Swanky" is what she calls her beautiful new room and elegant dining hall and landscaped courtyard. And she's right. It's lovely.  But the move has all but erased what progress we've made over the months  in mitigating her aggressive behavior and her general acceptance of her need for assistance.

And, change, to Mom, is loss. Every little loss compounds all her other losses and she relives them all again. The loss of her home, her pets, her furnishings, her career, her former husbands, her exciting youth – she relives the loss of them all.

Each and every one.

We've seen this before. Mom's first assisted living center took weeks for her to accept but as her dementia progressed, the relative independence of her living situation became dangerous. She needed more intense supervision and skilled nursing. After a brief hospital stay, Mom moved to a second facility where, once again, she had trouble adjusting. But she underwent physical therapy, speech therapy and occupational therapy for the 100 days that Medicare would fund her recovery and about the time she decided she loved the place, her time was up and a permanent spot could not be found for her there.

Another change. More loss. More "I want my life back" even though she cannot read a medicine bottle or walk to the bathroom or do any of the mechanical things it takes to live alone.

So, off to her third and hopefully FINAL living center. Once again, the adjustment is miserable. She's hostile She's got new aids, new nurses, a new room, new neighbors, new routines, and new furnishings. One thing I've learned about dementia patients: they need consistency. They find comfort in the familiar. They feel safe in their routines. They need to recognize faces. When you disrupt the things they've come to depend on as stationary, it's like yanking their walkers right out from under their feet and they relive the pain of losing their independence.

There are all kinds of quotes about change and how lack of it causes the mind and body to decay. If this is the case, Mom should be flourishing in her new environment because she's experienced so much change. But her reluctance to accept those changes is natural and common for patients with dementia and Alzheimer's. For Mom, it compounds her mental and physical issues and gives her something to mourn.

Day after day after day.

We do have our light moments, though.

I'll concede that while it is agonizing to watch Mom's aggression, intolerance, and distorted memories manifest themselves into physical and emotional combat with anyone who happens to be in the room, these moments are peppered with absurdities that would evoke pity were my sisters and I  not so desperate for a breath of relief, even comic relief.

"Kitty, kitty. Here, baby, come here," she says as she stirs her coffee with her index finger.

"Mom, your cat is not in your coffee cup."

"Oh, I know. I know. I'm just checking."

We prefer these lighthearted moments of confusion to the accusations, insults, paranoia, and delusions, but we see an increase in both when Mom has to move.

Change exacerbates her dementia.

So, my best advice to anyone considering moving a parent with dementia or Alzheimer's is to weigh carefully the necessity. We had no choice the first two times but given one, we would not move Mom again..

Change is loss.

Every. Single. Day.

The Madness Equation

Congratulations, it’s a bouncing senior citizen. The judge did not even bang his gavel as he solemnly awarded guardianship of my mother to “Team Sybil”, her squad of four adult kids who had sought champions for two years in this battle against mental illness until we realized we had to don the capes and tights ourselves.

Today, the children of madness became the parents of madness. Now, we can legally work as the super-hero team we had to become to make sure our mother’s physical and psychological and psychiatric needs were met. We’re her guardians, her watchmen, her protectors. She will now see the doctors she needs to see, get the medication she needs to get, live in a safe place, and be supervised by people trained to care for her.

This is HUGE!

In our case, we not only had to find a way to get psychiatric help for our aging mother but we had her abusive spouse to contend with, a man who legally had the ability to make choices on our mother’s behalf but who we believe is dealing with his own mental illness and suffering dementia on top of his underlying personality disorder.

So... we had Mom,  mentally ill with we don’t know what - narcissism, borderline personality disorder, histrionic behavior and maybe some schizophrenia -  and then suffering from dementia on top of her underlying illness, who married a man who is so Jekyll and Hyde that he seems to have a dissociative identity disorder and sociopathic tendencies but is also now dealing with some age-related dementia of his own.

When madness marries madness, it is NOT madness times two. The ripple effects on friends, family, co-workers, neighbors, doctors, law enforcement, government agencies, the court system and every person this pair interacts with is madness squared. SQUARED!

In another post, I’ll talk about the abuse we endured at the hands of both of these people, the altered reality they lived in, the threats, the accusations, the intimidation and how Mom's husband has been so obsessed with her back taxes (which is a non-issue because we've had IRS auto-drafted from her checking account monthly for over years now) that every doctor, police officer, banker, and mailman that crosses this guy's path hears about his tax woes.

But all of that is for another day.

With this court ruling, we’ve changed the madness squared equation. Now, when our mother wanders out the door naked, it will be into a hallway, not onto a sidewalk. She is not in danger of being hit by a car or even hit in the face by the husband who cannot understand why she is an often childlike, confused and unreasonable little-old-woman version of the strong, argumentative woman he married six years ago.

Guardianship awarded. Physical abuse proven. Visitation by the husband denied.

As the attorneys all side-bar’d at the judge’s bench, our mother’s husband shot us a glance of combined bewilderment and rage. How had he, a scientist and the smartest man in every room, lost to three such ignorant women and their idiot brother? Even the court reporter shivered when the attorneys turned toward him and his “I’ll get you, my pretty, and your little dog, too” face astonishingly morphed into a victimized old man, tragic and court-weary, longing only to visit his beloved wife whom he never once bothered to ask about in the six weeks since she’d been in supervised care. Never a “how’s she doing?” or “is her room nice?” or “are the new medications helping?” or “does she need anything?” Nope. Nothing but a bombardment of the same Jekyll and Hyde emails we had gotten for months, complaining about Mom's back taxes and threatening to sue us for assault one moment (apparently, if you come to the house to give your mother her medicine or drive her to the doctor, that is assault) and Mr. Nice Guy the next (begging us to stop these unnecessary assaults and still complaining about taxes).

But. we’re tuckered out little super-heros with tattered capes and runs in our tights and our heads ache from our crash course in justice from the real-life Justice League of attorneys, judges, and agencies in this state. We now know that  we can, indeed, leap tall buildings, but not in a single bound and never faster than a speeding bullet.

When it comes to mental illness, the solutions are complex and when we fail as a society, we fail big. People get hurt. People suffer. People die. Why, oh why, oh why? Because protecting a person from himself and protecting the public from a potentially dangerous person sounds elementary on paper and even less complicated in comic books and movies but the reality of our obligation to NOT rob a person of his rights, be unjustly invasive, or cross moral and legal and ethical lines with regard to a person’s liberties is an olympian sized conundrum when it comes to our ability to address mental illness at all.

It’s not as simple as identify it, cope with, treat it, and regulate it.

You see, madness is not against the law and people have a right to NOT get treatment.

That’s right. People have a right to be crazy. Period. If they aren’t a PROVEN danger to themselves or others, their odd behavior and subtle threats are “harmless”.  And that burden of proof is great.

For example, if your mother’s 73-year-old husband says he is going to “make you pay” and mentions he has 65 guns and could “resolve this another way”, it doesn’t matter if he is a red-faced volcano squalling in your face and clenching his fists, those words were not, by law, a direct bodily threat because he did not say “I will shoot you” or “I will kill you”.  You have to wait for that volcano to erupt.

- - - Like when he goes to your sister's house uninvited and punches her husband in the face. - - -

Yeah. THEN people believe you.

Talk about madness!

Today, I found great comfort in the Bible verse where Jesus says it is easier for a camel to go through the eye of a needle than for a person to force somebody with a mental defect to get psychiatric help.

Except for the part about THAT’s NOT WHAT IT SAYS! And, my own cheese must have slid off own my cracker if I’m re-writing the Bible (and plagiarizing Stephen King) to justify the maze of agencies, cries for help, phone calls, doctor visits, and complexities of the legal system that we have maneuvered, hurdled, and trudged through.

And, I was only kidding. We had no capes.

But it’s true. You cannot force somebody to go get help. You cannot make them. You can’t. They have rights. So the conundrum is, if someone is really functioning in a diminished capacity and refusing to get treatment -

they are not capable of making decisions about their own safety and welfare but they have every right to make decisions about their own safety and welfare. 

Our guardianship hearing is only part ONE of the battle our team of super-heroes faces. Because, you see, our mother’s husband is still out there, bombarding us with emails where he has translated things we've said in the real world into the language of his fractured world and then spit those words back out at us in a venomous rant of victimization.

Heaven help us.

Guardianship means nothing to my mother's husband. Her business is his business and he cannot let go. He's making phone calls he is not allowed to make, writing letters he is not allowed to write, and is even showing up places he is not allowed to show up due to protective orders against him. And, even though he has proven himself mentally and emotionally unstable and even though he has proven himself violent to my mother and to her four kids, it's not legally a threat when he says to us if we get in his business, "I WILL STOP YOU".

The madness continues.

Mother's Day Madness

Okay, campers, rise and shine, and don't forget your booties 'cause it's cooooold out there today.

Holidays, when we were growing up, always ended the same way; with my mother sulking, yelling, or crying about how much we did not love her. It was like watching Groundhog Day only each of us four kids was Bill Murray witnessing the same manic depressive day over and over. Easter and Christmas were tense enough but Mother’s Day? That was the single most dreaded day of the year because nothing we did could prevent our mother’s tormented scene about what wretched kids we were.

And, we believed her.

Mother’s Day is the holy of holies for Moms; the day kids stop and make sure their mothers know they are loved and appreciated. For us, it was the day we always committed the ultimate affront to motherhood with our crude homemade gifts, sub-standard breakfasts in bed, lame handpicked flowers, and puny shows of affection. It did not  “come from your heart” was her angry complaint when she rejected our gifts. Year after year, we tried to come up with a new way to prove our love for our mother on this sacred day and year after year we got slammed doors, artwork in the trash, and home baked treats that went uneaten.

I know, right. That's cold.

In our teen years, my siblings and I started buying gifts with what little money we managed to earn babysitting or mowing lawns or selling lemonade. We graduated to stealing money and shoplifting  necklaces for her but they still “did not come from your heart”.

Eventually, all gifts sat unopened.

It was a Mother’s Day that made me decide to move away from home my senior year in high school. Mom had already kicked one brother and one sister out of the house. There was nobody left but me and my second grade little sister. I managed to save some money and borrow the rest from my ex-stepfather who took me shopping to buy my mother a pair of jeans and blouse for Mother’s Day but it resulted in her beating me on the head with the box and screaming that it didn’t come from my heart. The next morning, she had another tantrum, slapped me, pulled my hair, and accused me of plotting against her. Unable to cope with the madness any more, I left to live with a friend. After graduation, I went to San Antonio to visit family including the sister my mother had kicked out earlier in the year and surprise! She was wearing the jeans and shirt I had bought my Mom for Mother’s Day. My mother had mailed them to her as a birthday gift.

Uh. Huh. I know. Colder than the trash, even! But that became a pattern with Mom. Re-gifting our gifts to our siblings. Over the years, we started asking each other what to buy Mom since we knew she would give it to one us anyway.

Fast forward to today: Mother’s Day, 2014

We, the grown-up kids, are now petitioning the court for guardianship of our mother. Such is the severity of her mental illness and dementia. There have been years when we thought our mother had outgrown some of the paranoia, narcissism, and  erratic behavior of her early age. We have had some good times. We have had some not so good. We have had some awful. Now that she is 69 years old, time has eroded her filtering system and vascular dementia has set in. We’re seeing a lot of the same behavior we saw when we were teenagers and it’s Groundhog Day again.

But, not always.

My sisters and I went to see Mom today at the assisted living center and took one of her granddaughters. We brought her flowers and cupcakes for Mother’s Day. She was thrilled! She actually loved her Mother’s Day cupcakes and even ate three of them! Can you believe it? She had to get dementia to appreciate the thought behind a simple gesture. And who could blame her? The flowers were gorgeous and when we shared her cupcakes with the other senior adults, they remarked on how fortunate Mom was to have kids that come see her so often. This made Mom feel a little bit important. All in all, not such a bad Mother’s Day.

Until, it was time for us to leave and she said she hates the place and the food and the people and wants her cat and wants her own stuff and wants her own house and how she loves her cat more than her daughters . . .

Okay, campers, rise and shine, and don't forget your booties 'cause it's cooooold out there today.