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.

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.

When Madness has Rights

One thing both sides of the gun-ownership versus gun-control argument can agree on is that we don’t want people who are mad as hatters running around Wyatt Earp-ing it up with loaded weapons. If you crack like Humpty Dumpty, you no longer have gun ownership rights. Right? At least that’s the way these things are supposed to work here in Texas.

In theory.

This is a very real and personal issue for me and my sisters because my mother’s husband has threatened to shoot us. SHOOT US! Oh, he's clever about the way he words his threat so the District Attorney cannot call it a threat of bodily harm but when a man clenching his fists and snarling through his teeth says he will make you pay and then lines up his rifles by the door and readies his pistol drawer, he is not asking for cab money.

Let me bring you the last two years in twelve sentences:

Mom was mentally ill to begin with.
Then, Mom developed dementia.
Daughters tried to get Mom help.
Her husband launched a war.
Verbal assaults. Physical assaults.
We all went to court.
War over. Sanity won.
Mom in assisted living.
Kids have guardianship
Hired dragons to protect mother.
Husband still out there.
And, he’s mad.

The recent Casey Kasem stories have brought me to tears. No joke. He is old, infirm, and living with Alzheimer’s disease. Like my mother, he is at the mercy of his care-givers and like my mother, it appears that his kids are doing everything in their power to get Kasem the mental and physical help he needs, only to be thwarted by his spouse who publicly questions their motives and sabotages his care.

So... let’s jump right on this mental illness issue.

Actually, lets talk about guns.

Okay, let’s do both.

That disturbed young man who murdered six people and wounded 13 others in Santa Barbara legally owned three handguns. Three. Only three.

My mother’s disturbed husband owns 65. No, that is not a typo. He legally owns an arsenal including modern semi-automatic guns and black powder antiques, pistols and revolvers, rifles and shotguns. He has it all. Guns are his passion. His life. He also does this cowboy-gun thing where he shoots black-powder weapons on the weekends so the garage is a workroom full of gun powder, pellets, muzzle loading equipment and stuff to make his own bullets.

The angry and confused man that took his revenge on his fellow students had been spoken to by authorities on three occasions in the past year.

The angry and confused man married to my mother who has threatened revenge on her daughters has been spoken to by the police about a dozen times in the past year, most of those events since January and for family violence.

The agitated student in Santa Barbara made rambling manifesto-type videos.

My mother’s agitated husband sends us daughters rambling manifesto-type emails at wee hours of the morning.

The student in Santa Barbara was once charged with assault this past year and that was when he tried to file charges on his roommate but police discovered he was the aggressor.

My mother’s husband has been charged three separate times for assault, had three separate emergency protective orders issued against him and one is in place right now. RIGHT NOW. You see, after we took Mom to the mental hospital, he went to my sister’s house, threatening us daughters and then when my brother-in-law ordered him out of the house, that old guy punched him in the face, grabbed him by the throat, and then the punched him again.

The Santa Barbara shooter had been treated by multiple therapists and managed to conceal his mental instability for quite some time.

My mother’s husband has been treated by multiple therapists and managed to conceal his mental instability from the police, Adult Protective Services, and even his own attorney for quite some time. It’s out in the open now. One psychiatrist fired him as a patient and another doctor told him (with my sister in the room) to get his guns out of the house because his nature is just too unpredictable.

So why does my mother's husband, this man with a history of violence and a documented mental illness, who has written rambling unstable letters, who has a history of assault, and threatened me and my sisters have a right to own 65 guns?

Primarily, because nobody has made it a priority to try to take them away from him yet.

According to the Texas Government Code, 411.172, a person cannot keep, own, possess all those guns if he’s mentally ill BUT there needs to be evidence from a licensed physician. Okay, well, plenty of doctors know he’s unstable but what is the process for getting a declaration of mental illness for the purpose of removing the guns from his home and how long does it take and who is going to do it and who is going to protect us from his rage when he learns we got that ball rolling?

If he keeps all those weapons, we are in perpetual danger. If we seek to get the weapons removed from the home, we are basically provoking him and putting ourselves in even more danger.

This is a man who has threatened suicide, who flies into a rage when any minor thing doesn't match his recollection, and who will not hesitate to lunge for your throat or throw his fists to display his superiority.

Can you even imagine what a person with that kind of rage and that many weapons would do if provoked?

Sure, you can. Just turn on the news.

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.

A Puff a Day Keeps Alzheimer's Away?

Have you seen the articles that discuss the pioneering research of Professor Gary Wenk out of Ohio State University that says smoking marijuana before the onset of degenerative brain conditions can prevent and slow down dementia and Alzheimer's? He even suggests that people who smoked marijuana regularly in their 20's and 30's and less likely to get dementia or Alzheimer's in their 60s and 70's

Sigh.

I do wish I believed him but his research appears to be based on a single premise: that chronic brain inflammation is the underlying cause of age-related dementia and that cannaboids in marijuana have the ability to halt the brain's inflammatory response.

Problem: dementia and Alzheimer's disease are not one-size-fits all.

The current prevailing medical opinion is that Alzheimer's is caused by a protein called amyloid-beta which forms a plaque in the brain that kills neurons and causes memory loss and cognitive problems Dr. Wenk's research also does not appear to take into account other types of dementia not related solely to inflammation like vascular dementia which can coexist with changes in the brain like Alzheimers. Vascular dementia is caused by mini-strokes that block the blood vessels. Then there's dementia with Lewy bodies where a protein called alpha-synuclein develops in the cortex of the brain. This is the same protein that also is present in Parkinson's. Okay, so we've got Alzheimers, vascular dementia, Lewy body dementia and then there's the trifecta of dementia where all three conditions co-exist and that's known as mixed dementia.

And, according to Dr. Wenk's research, the mutant proteins that cause Alzheimer's appear shortly after birth to which he says, "My research suggests that it is never too early, or too late, in life to begin using very low daily doses, i.e., one puff per day.”

Based on what we know about the vast differences in dementia and its causes, until we know more this statement is, in my non-medical opinion, false hope. The puff only affects the mutant proteins. How will it prevent mini-strokes? How will it prevent the formation of alpha-synuclein?

Maybe some day, science will isolate the offending factors in Alzheimer's, AIDS, Parkinsons, Multiple Sclerosis, and ALS and be able to use medical marijuana to prevent or retard the effects of these crippling conditions. If so, I'll stock up and even grow my own if I have to because with the extreme dementia my mother has and the Alzheimer's her mother had, I've got a humongous scarlet A on my forehead already and it is not the Nathaniel Hawthorne kind.

• Medical Marijuana May Prevent Alzheimer's Disease - February 19, 2014
• Alzheimer's Association - Vascular Dementia
• Berries for Brain Health 

The Wish Horse

Once in awhile, as a writer, I have the privilege of meeting a kindred spirit. Lisa Ford is one such spirit. Her latest film project, "The Wish Horse" hits me square in the forehead as the kids in the story live with a parent who has a mental illness. In this particular story, a 13-year-old boy has to look after his younger sister when their mother abandons them. And the horse? Well, believing it can grant wishes may be just what these kids need to help them cope.

My brother and sisters and I grew up with a parent with a mental illness. We knew something was different from other kids' lives but it took us awhile to figure out that it is just not normal for a mother to kick in a bedroom door in at 4:00 a.m. and accuse us of stealing her panties. We love our mom and we each tried in our own ways to earn her affection. I was the over-achiever. My sister would act out in attempts to get my mother's attention. My brother tried being her friend and confidante. But what we all had in common was how we retreated into our imaginations, our music, our books, and our dreams. This is why this film is so important to me.

Worried because it's a message film and it might be a downer? Lisa's last film, Prodigy, was a beautiful, poetic piece of work. Mental illness is rampant in parents of children I volunteer with and if we don't learn recognize it, nobody can help these kids.

According to Michele D. Sherman of Social Work Today, “More than five million children in the United States have a parent with a serious mental illness (SMI) such as schizophrenia, bipolar disorder, or major depression.” Our hope is that the characters in our fictional story will resonate with audiences and start a conversation about this important issue. Lisa Ford

Consider helping Lisa Ford accomplish her goal and support "The Wish Horse" by clicking here.  Every donation amount will help bring this film to life and when you think about all the money we spend on Netflix and Red Box and the movie theater, $10 or $20 to bring a story like this to film sounds like a worthy use of our movie money.

Divine Madness

In 1980,  Mount St. Helens killed 57 people, the Kwangju uprising for democracy in South Korea took over 2200 lives,  the Soviet rocket, Vostek, exploded on the launch pad killing 50 people, and hurricane Allen killed 272 people and left hundreds of thousands homeless in the Caribbean and on the Texas coast. And, I'm barely scratching the surface here of the human tragedies that happened that year.

1980 was a mad, mad year.

In other 1980 news, the U.S. boycotted the Moscow Olympics, Ronald Reagan defeated Jimmy Carter, Norman Mailer won a Pulitzer, the Letterman Show debuted, and Iraqi president Saddam Hussein declared war on Iran. That was also the year Radio Caroline's Mi Amigo ship sank and the New York City Transit Workers Union went on strike.

Oh, the records and broken records, the entertainment and sports news, the politics, space exploration, the scandals, the disasters. It was a year of the weird, the sad, the miraculous and I'm forgetting something. . .

No. I am not.

That year, 1980, that mad, awful year, is the year John Lennon was murdered by a deranged fan.

Life is life. Each matters. Each person's value is precious beyond a price tag. But when John Lennon died, something changed within me. Sure, the sorrow was unspeakable but his death woke me up to something I had been asleep against. I suddenly saw something with adult eyes that my child eyes had missed.

I mentioned that John Lennon was killed by a deranged fan. Deranged. A deranged person caused irreparable harm to the person he supposedly loved most. How is that possible? To cause harm or even destroy somebody that means that much to you? But the person of John Lennon was destroyed and that wound was felt around the world, evidenced by the pain of people who never met the music icon, but grieved his loss like the dagger in the heart of humanity that it was.

Anyone who takes a life must be a monster, right? Or, is it possible that sick people -- mad people, insane people, people not right in the head, lunatics, call them what you want -- are capable of destroying people they care about?

Wow. This was profound. This was frightening and comforting at the same time because if it is true that mentally sick people are capable of intentionally hurting the ones they love the most, then maybe the verbal abuse and neglect my siblings and I were experiencing was not at the hands of a parent who hated us but was at the hands of a parent who was not well. Maybe, the mother who was supposed to provide for and protect us but, instead, harmed us and left us to our own devices . . . was sick?

Somehow the death of John Lennon, devastating as it was to us kids who had grown up Beatles fans, helped me come to terms with an environment that I might otherwise have succumbed to. For the first time, at age seventeen, I began to think my mother was not just rude to my friends, lacking in empathy, mean to us, angry at the world, and antisocial.

Something was wrong with her.