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.

Madness Cries Wolf?

Remember my last blog post about how the ownership and possession of firearms by a mentally ill person is a bad idea? Uh huh, well, yesterday, my mother’s husband wrote on his Facebook wall.

One word.

No caps. No punctuation. Just a terrifying word floating on his otherwise ignored Facebook.

This man never speaks in shorthand. He writes rambling interminable e-mails, corners you for an hour while he complains about his taxes and compares the rotation of a bullet to that of a football and then follows up that conversation with a thirty minute phone call just to make sure you did not miss anything he had said earlier.

One word. That's all he wrote.

sorry

As soon as I saw it, I knew.

This one word was a suicide note.

Not wanting to panic or over-react and scare everyone, I thought the most rational course of action was to run around the house screaming “Oh my God, he’s gonna kill himself!”  But, apparently, that does not accomplish anything so I also called his daughter and went to the police.

Long story short. He’s fine. Maybe he was not planning suicide and that one word was a cry for attention or a warning that he was about to go shoot up a shopping mall but whatever it was, three squad cars full of men in blue let him know IT WAS NOT COOL.

You see, for two days, his bail bondsman had been calling me looking for him. He had not checked in. And, he had not answered phone calls from his daughter and a multitude of other people either.

First of all, I’m like wait - whu - huh?  He gave MY NAME to his bail bondsman as a reference?

I tried to play it cool when they called but for real, my mother’s husband hates me! This is not just any ol’ hate either. This is a deep-rooted “she’s some kind of voodoo witch” mixture of fear and hate. AND, I am part of the reason he even HAS a bond in the first place since he assaulted my brother-in-law after he was ordered out of the house for griping at my sister for twenty minutes about what? Taxes and ME. I’m evil. I’m the worst person he’s ever met. He’s going to make me pay one way or another and he has a gazillion guns so if this was 150 years ago, he could solve this another way.

But yeah, dude, go ahead and use me as a reference on that bond even though a protective order prevents you from coming near my house.

Weird. But that is how illogical this guy is.

Anyway, even though the panic is over, I’m still shaking. I was certain this man had done something foolish or was about to and even though he physically abused my mother and assaulted my brother-in-law and causes the rest of us more grief than I care to share, he’s still a human being. No doubt, he is dangerous. But what hell must go on inside his head that he would remind us so often that suicide is a way to escape it?

There has to be something more we can do besides fear this guy, blog about him, and pray that he does not hurt himself or somebody else. His daughter is trying to get some help from his psychiatrist, my sister had a chat with his neurologist, and I called our attorney today. I asked if there is anything we can do. What if he was trying to kill himself yesterday? Isn't that enough to force him to get help? A judge cannot rule on "what if"s, she said. And, I have said before, it is not against the law to be mad. Crazy is not a crime. Mental illness is not illegal and nobody can force you to get treatment.

BOTTOM LINE: If you are mentally ill you have the right to refuse to get un-mentally ill even though you are not un-mentally ill enough to make that decision.

Until my mother’s husband hurts himself or somebody else OR somebody in a position of authority gets legal documents declaring that he is a danger to himself or others, he has every right in the world to be mad as hatter.

When our mother was refusing mental health treatment and her husband was blocking us on top of that, we kept hearing over and over that we needed to get a mental heath order. Her condition was deteriorating at an alarming rate and a mental heath order was quickly becoming our last and best hope. But, we did not want our mother taken away in handcuffs. We could not put her through that. Then someone said something that changed the way we think. She said, “if it was my mother, I’d much rather see her leave in handcuffs than in a body bag.”

We found the courage to make tough decisions after that.

And, I stopped watching Forensic Files.

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.

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.