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.

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.

Growing in the Dysfunction

Imagine you find a magic fountain or genie in a bottle or a Super Mario warp whistle or some other source of enchantment that would allow you to go back in time and then erase the worst moments in your life. You could simply banish that awkward moment, foolish error, or painful loss from your history so its vindictive shadow can never again make an ugly uninvited appearance in your memories. Poof! It's gone. What might you delete from your life so that it can no longer haunt you?

How about a big fat nothing? Cuz, seriously, imagine a butterfly effect in your life where you selfishly erase that horrible, embarrassing, awkward moment your junior year when your tampon leaked and you had to wrap your sweater around your waist like it was 1950 even though it was 110 degrees outside and even though erasing that moment in life would get you the best prom date in high school and the dream spouse of your life and a yacht and a pony and full time personal trainer and so many diamonds, you would sink to the bottom of your Olympic sized pool, it would also result in a tsunami that kills 30,000 people. Can you live with that? Would you let 30,000 people die so you can watch a shirtless pool boy named Mauricio glisten in the Miami sun?

But, I digress. Stay with me, though, I have a point in here somewhere.

Now, my question to you is, "do you like who you are?"

If you do, then you can throw away that genie in the bottle and walk away from that magic fountain because everything in your life - good, bad, odd, joyful, devastating - has made you who you are. Your passions, your goals, your likes, and your motives are all a composite of your journey in life. Remove the bad car wreck when you were sixteen and you remove that cautious driver at forty who now makes sure her teenager slows down on service roads.

Maybe there is no valid argument for accepting death, crime, and other tragedies as growing pains but for me, personally, I can say that if I could go back and remove the physical and mental abuse, neglect, embarrassments, fears, and life with a mother suffering from an un-diagnosed mental illness, I would not. I would have much preferred the Ozzie and Harriet life, but the dysfunction I suffered growing up has not stopped me from becoming a functional person and I think the reality today is that more and more families are so increasingly dysfunctional that I'm worried my third grade nephew's class schedule will say Math, Reading, Recess, Recovering from Addiction, Living with a Schizophrenic Parent, and Suicide Prevention.

There is no shame in the dysfunction I grew up with. It was not my fault.

I was sexually abused by not one, but BOTH of my grandfathers. I was a small child with one and not yet a teen when it began with the other. Victims of childhood sexual abuse are not responsible for what happened to them and even though it may take many victims a lifetime to accept it, the truth is that children are subject to the authority of adults and are not accountable for what adults do to them.

But WHY ONE EARTH would I say I would not go back and erase the madness?

Hang in there. I'm getting to that.

It's weird that while I despise the mention of the name of one grandfather, the harm the other one caused is kind of an unemotional memory because I was so young. I rarely discuss either one of them at all. But my memories of them have starkly contrasting emotions attached even though they both did nasty, unspeakable things to me.

With one grandfather, I remember pain and fear and shame and a tremendous sense of invasion and the need to protect my sisters from this monster. I remember telling my mother what he was doing and getting a curt "Oh, Mary" in her "just stop it" tone of voice and wondering why this was okay with her. I remember wanting to run away and to sleep forever because sleep was the only time the pain in my life went away.

Such is the memory of an almost teen.

With the other grandfather, the bad things that happened are kind of dream-like and far away because even though I remember it clearly, what I remember more vividly is him brushing my hair, giving me baths, reading me books, taking me to the five and dime store and making up the most ridiculous stories about the monkeys who lived in the traffic signals and railroad crossings. There was no fear. I felt nurtured and protected despite the ugly things happening to me.

Such is the memory of a small child.

Were they both monsters? Both just sick men? Both situations are messed up beyond decency. Both should never have happened. And if I could back and erase any of the unspeakable things that happened to me, I would not. Not one single awful, terrible, nasty, ugly, violent moment because I like who I am today.

They say survivors of childhood physical or sexual abuse can become abusers and that most sexual predators were once sexually abused as a child. Well, I say that while all poodles are dogs, MOST DOGS ARE NOT POODLES so to lump all childhood victims in the same pot is as ludicrous as saying rape victims will become rapists. And, more victims of childhood abuse become advocates than abusers.

Childhood sexual abuse is vile. Dysfunctional childhoods are a tragedy. Living with a parent who has a mental illness is nightmare. But we can grow through all this ugliness to become human beings that leave positive footsteps and prevent others from experiencing the lives we lived.

What living a dysfunctional life did  for me:

• Knowing what is like to not have food in the house has taught me care if people are fed.
• Knowing what it is like to be slapped and struck has driven me to fight for the physically abused.
• Being verbally abused, belittled, insulted, and made to feel small has taught me to treat people with kindness, compassion, respect and dignity.
• Being sexually abused as a child has made me a fierce advocate for children
• Feeling unimportant has taught me that everyone needs to know that they matter.
• Feeling helpless has instilled in me a passion for victims of all kinds
• Feeling afraid as a child has given me the courage to stand up for what I believe in as an adult

And, there's more. Much, much, more. But, this post is already too long. What has being a victim of dysfunction taught you?

There is actually ONE thing I'd like to go back and change. I have a fear of the sound of an automatic garage door opener. When I was a teenager, my sister and I shared a room above the garage and when that door went up, our room would shake and roar. That meant Mom was home from work and we were likely about to get screamed at, accused of something, cursed at and slapped for - oh, I dunno - not putting the vacuum cleaner away or forgetting to bring the mail in.

So, if I could change something, maybe it would be my irrational reaction to automatic garage door openers.

But, then, ten million acres of rain forest would probably die off somewhere so I guess it's just a good thing we converted our garage.

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.