When There’s Nothing You Can Do… You Let Go

The running joke about me is that I see the glass as half empty………… The reason I choose to view most every situation from this angle is to avoid disappointment. It’s a method that’s served me well………….. especially when it comes to my family.

Of course, I would never describe myself as a pessimist. That’s just tragic.

I’m more of a realistic. Because the reality is…………………………

My mom is currently being “stabilized” with psychotropic drugs. After we were told that she had to leave her home, I begged my dream nursing home to consider accepting her…. they had a reputation for taking tough cases………if you’ve read this blog, you know my mother is challenging………………. dream nursing home decided to send out a nurse to further their evaluation. I was feeling optimistic. I thought, maybe this is an early birthday present……………………. Not five minutes after meeting my mother, the nurse told me that she needed to be in a lock down facility where she could be stabilized……… and they only way to get her to said facility would be to call 911.

Ten hours after 911 pulled up and carted my mom away, we found a bed at a unit that works to “stabilize” people like my mom.  That’s the thing with difficult dementia patients……….. most nursing homes won’t accept them if they are yellers (it disrupts other residents), combative (apparently, not an attractive quality) or aggressive (no one appreciates a black eye). My mother is a yeller. And she is quote-unquote combative. Not my word……………. and sorry, if a stranger were wiping your ass, I think you’d behave “combatively,” ………… as for the aggression part, well, it wasn’t her. Unfortunately, yelling has unintended consequences……………… like pissing off other dementia patients — a resident at the last home wanted to punch her to shut her up………… sigh.

Now here we are, waiting for her to “stabilize.”

And then we look for a permanent facility.

The more challenging dementia cases, usually end up at places that can deal with behaviors…………….. Unfortunately, there are very few “behavioral” facilities, and the ones that have a good reputation also have no beds. We are currently on a waiting list for one……………………

Think about that for a moment. My mom is on a waiting list for a bed at a facility that has limited space………… So, in order for a bed to open up, one of three things has to happen:

1. Someone has to be cured of dementia.

2. Someone has to be transfered to another facility.

3. Someone has to die.

We are waiting for someone to die. Preferably a female.

Glass nearly empty.

That’s our reality.

Dementia is a grotesque disease. And when you peel back every grotesque layer, what’s left is a putrid, rotten pit……………. or, reality.

The reality is, I have very few choices.

The reality is, there is very little-to-nothing I can do.

The reality is, I cannot save my mom.

The reality is, I have done everything I can do.

The reality is, I have to let her go.

The reality is, I have lost.

The reality is, I am accepting all of the above.**

** Somedays, reality is a tougher pill to swallow than others.

Nothing has ever been easy about this disease, her disease………………. the price we’ve paid as a family, well, there’s no coming back from it. In many ways, I’ve lost both parents………….. one to the disease; the other to her disease. Her disease has made us more grotesque…………………. her demise is a staggering loss, heartbreaking, devastating. When I sit back and think about what the disease has done, where it has taken us, how its nefarious tentacles has slowly suffocated us……………….it’s still suffocating us……………. it’s a curious thing how something can infiltrate and devastate the family unit to the point where there is no point, no coming back.

No happy ending.

Grieving for the living is a strange thing……………… Closure comes in the form of accepting what is…………….. I think.

I don’t really know.

>>Flickr pic by Meredith Farmer

Go to Jail. The Game of Dementia

I’ve been thinking a lot about Amanda Knox (yes, the Foxy Knoxy)…. the American student who was imprisoned for some four years in Italy…. I’ve been thinking about her because much has been written about her ordeal, what she went through day in and day out, her routines, her rituals, the things she did each and every day so she could survive, so she could stay sane……………… her “suffering” got me thinking about the prison my own family lives in.

Allow me to insert my own disclaimer here…………….. No, I can’t relate to Amanda Knox or her trials and tribulations, that’s not the point of this blog post… k?

My mom, or what’s left of my mom’s gray matter, is trapped……….. locked away and no one can reach her……………… But what scares me, what is truly a revolting thought, is the idea that there might be a glimmer of her screaming for help.

To hear her.

To save her.

We know so little about dementia…………… words like, “a fog” are used to describe the state of the demented mind, but what if we’re wrong? Way wrong. What if she’s lost, trapped, unable to find the word, to reach out and tell us that she’s still here?

And then there’s my dad. My dad is in a different kind of prison. His prison is both physical………. he lives at home with her and he stays there, mostly 24/7………. and emotional………… he struggles to cope. My dad is angry. To be painfully blunt. He’s bitter, resentful, angry and he has a nasty habit of going back in time to relive all of the woulda’s, coulda’s and shoulda’s of his life. A dangerous (and addictive) game to play…….. I’ve never seen my dad like this, and it’s taken a toll — on him….. and on me…….. I mean, let’s face it………… the obvious coulda is their marriage…………. had he not married my mom, he coulda had a different life. Had I not been a factor, he woulda had options………… my parents marriage was hardly perfect; not the model example of wedded bliss…………….. I knew that VERY early on.

I remember wishing that they would get a divorce because I hated the fighting, the yelling………………. I would take long walks when they would argue and just sit in a park by my house — we lived in a mountain town in New Mexico and the silence was always welcome……………. to this day, I hate really loud noise………… loud music, loud people……….. I just want to savor the stillness, the hush………………..

Unfortunately, when coping with one parent who is deathly sick and the other who is struggling to stay afloat (he flails so much, I worry he could take me down with him) …………it puts me in a position whereby I’m trying to save everyone…….. trying to keep the peace, trying to play the therapist when I’m the daughter………… trying to make sure needs are met, trying to make sure life feels normal (I know, believe me)…….. trying to do what I can so the quiet stays for as long as possible…

I love my mother and my father……… I miss them, and yet, they hardly know me………. well, he hardly knows me………. still, they’re all I have in terms of my family of origin; and sometimes, when I sit back and think about how this grotesque disease is slowly decimating my family, I can’t see past the moment……….. I can’t look into my future…………. it’s black. There’s nothing.

It’s a frightening thought, but then not really because it’s my reality……….. my own prison.

If that makes sense.

>>Flickr pic by Funky 64…www.lucarossato.com 

My Demented Mom in the Sacramento Bee… “We don’t have survivors.”

The Sacramento Bee interviewed me for a story about early-onset Alzheimer’s… the piece ran last week. Not sure how much attention or awareness I brought to the issue, but hopefully, my tiny part in this story will get more people thinking… dementia is not an old-person’s disease. People as young as 30 or 40 have been diagnosed with dementia… people with young children, teenagers. This disease does not discriminate. It does not care who you are, what you do, what color you are of if you’re rich or poor…………. can’t help but roll my eyes at the pettiness in our politics, when I know, you know that in 40 or 50 years, the real crisis isn’t going to be whether the Earth was formed 6ooo years ago or 6,000,000,000 years ago… the crisis will be this disease. A disease we are neither prepared for, nor can we afford. Hopefully, people will start to wake up…. listen up world, this disease is coming for you and its merciless.

 

Early-onset Alzheimer’s strikes people in their 50s 

acreamer@sacbee.com

PUBLISHED THURSDAY, AUG. 18, 2011

Starting in his early 50s, Lou Bordisso Jr. knew something was wrong.

One time, he got lost in a Macy’s store in San Francisco and couldn’t find his way out. Another time, expected in a meeting, he rode confused from floor to floor in one Financial District skyscraper, then the one next door.

“I could not for the life of me find the conference room,” said Bordisso. “Then one day, I couldn’t remember how to log in to my computer. That was the beginning.”

At 57, the American Catholic Diocese of California priest should be in the prime of his life – but last year, he was diagnosed with dementia related to Alzheimer’s disease.

There’s good reason we think of Alzheimer’s as a problem of old age: Age is the degenerative brain disease’s only known risk factor. Fully 90 percent of people with Alzheimer’s are 75 and older, experts say, and nearly half of people over 85 have it.

Even so, according to the Alzheimer’s Association, a small sliver of the diagnosed – up to 5 percent – haven’t yet seen their 65th birthdays. That means 200,000 Americans younger than 65, including 19,200 Californians, have the disease.

The early-onset form of Alzheimer’s is little understood. Experts know that for a small number of people whose memory loss begins in their 30s and 40s, genetic factors play a role. But why do other people in their 50s and early 60s get the disease?

Researchers don’t know.

“It’s a less common age to have this disease,” said Judy Filippoff of the Alzheimer’s Association of Northern California. “At 65 and younger, most people don’t expect this diagnosis. They have many responsibilities, and they haven’t slowed down, either physically or mentally.

“And now they have to change their life in ways they didn’t imagine. It can be quite a shock.”

Much too early, people diagnosed with early-onset Alzheimer’s lose their past as well as their future. The disease is both progressive and fatal and has no known cure.

Mike Fisher spent his career with law enforcement in Contra Costa County. At 50, he was Lafayette police chief as well a Sheriff’s Department lieutenant.

Then he was diagnosed with Alzheimer’s.

“I was having a hard time remembering codes,” said Fisher, now 53, who lives in Benicia. “I was having memory problems in my 40s, it seems like. I hit 50, and it’s gotten worse more quickly.”

Many people with early-onset Alzheimer’s still have kids to raise and families to support. Many are helping care for their own aging parents or planning for their own retirements.

Suddenly, the future they mapped out disappears, not only for them but also for their loved ones.

In that sense, Fisher is lucky: He retired from the Contra Costa County Sheriff’s Department with generous pension and medical benefits, and his 18-year-old daughter recently entered community college. Yet he knows his wife of more than two decades will be his caregiver one day.

“You plan as much as you can,” he said. “We go to support groups, and you can see the progression of the disease. It’s kind of scary, to be honest. It can be very sad at times.”

In her blog inspired by her mother’s dementia, 34-year-old Phoenix writer Kathy Ritchie has discussed Alzheimer’s as an ongoing process of grief and loss for family members. Many people coping with their parents’ early-onset disease are still in their 20s, she says, and they feel cheated out of the friendships that develop between parents and their adult children.

“We don’t have survivors,” said Ritchie. “The only people who bear witness to this disease are family members. It wreaks havoc on families. The toll it takes, I can’t even describe it.”

Lou Bordisso Jr.’s diagnosis presents a different kind of role reversal. His father is 97, and though Lou Sr.’s hearing is bad, his mind is still sharp. As Lou Sr. recovers in a rehab facility from a recent illness, his son came home to Sacramento from Vallejo earlier this year to care for him.

Instead, father and son share a caregiver.

Lou Jr. can’t drive any more, because he misjudges distances. His balance is off: Unless he uses a cane, he’s unsteady on his feet. Without help, he forgets how much medication he’s taken.

Since his diagnosis in May 2010, his life has changed enormously, downsized to a quieter, more manageable shape. He was bishop of his diocese for several years, but he took bishop emeritus status instead. The longtime marriage and family therapist also resigned from his secular job in forensic mental health with Contra Costa County.

“I was making mistakes,” he said.

He lives now in the Land Park house where he was raised. Being on familiar territory helps. Never married, he counts on his close-knit extended family for assistance.

Bordisso receives state disability insurance and has applied for early benefits from Social Security, which has added early-onset Alzheimer’s to its expedited access list of “compassionate allowance” conditions.

“I’m used to being a responsible person and doing my part,” said Bordisso. “Being on the receiving end of services is a difficult place to be. I’d like to be a productive member of society. I want to be able to contribute.”

Not long ago, he was named to the Alzheimer’s Association’s early stage advocacy committee, a national advisory board.

And he finds new, unexpected meaning in this unwanted stage of life.

“I can’t recapture the past,” he said. “I don’t remember it. The future, I have no idea what it holds.

“The gift of this disease is to live in the moment. Now is all I have. Literally.”

 

Bad Thoughts. By a Bad Daughter

My Demented Mom

I’m going say what you’re not supposed to say……………………………………

I’m counting down the years until my mom dies…………………….

Let’s see. It’s been about about 5 years since I first noticed something was horribly wrong. 4 years since her “official” diagnosis of Alzheimer’s disease…. which turned out to be Vascular Dementia, or maybe it’s both—mixed dementia No one really knows. Most of her doctors don’t really seem to care, it seems. Probably have another 4 or 5 to go based on what I’ve read and the stage she seems to be at. Yeah, I can deal with 5 years.

6 might send me over the edge.

But 5 is a pill I can swallow.

4 would be a blessing.

3… there is a God.

2… there is a God who likes me.

That is my inside voice convincing me that it’s OK….. that I will be OK….. that I can cope with this and keep on going. You see, there will be a time when “normal” returns and the hurt and frustration that I feel almost daily will come to an end.

There is a light at the end of the tunnel. It may be very far off, but it’s there.

KATs BRAIN…….. Welcome. That is how I rationalize this ordeal….. and now that you understand that, that I am merely trying to protect me from everything going on around me, you might not think me so foul a daughter……………………..

………………………………that if you were in my position, you might pray for her death.

(Or you could say I should embrace each moment and step into her shoes, into her world, whilst at the same time smiling and dancing with her as she tumbles down the demented rabbit hole. Ah, the simple joys of dementia.)

Alas, I am a realist. And I see firsthand the toll her disease has on the people around her. Her disease is devastating. I not only worry about my dad’s stress level, his physical health and mental deterioration, but I wonder how much her dementia impacts me…. subtly, chipping away at me.

Here’s what I know…. I am in a constant state of worry. I just worry. I can’t help it, nor can I stop it. I worry about her. I worry about dad. I worry about my cats. I worry. I worry every time I plan a vacation that my plane will crash and my dad will not be able to cope with mom alone. I worry that I will be killed on the way to work, again leaving dad alone to deal. I worry that I’ll develop cancer at 33, only to die (again) and leave dad to fly solo, with mom constantly calling my ghost……….. This number has been disconnected.

Hola, mijita Kathy. I luf you, yo so tu papi. Tu eres mi esposo. Tu saliste de mi. Que dios te bendiga.

To not worry is to be outside of my comfort zone.

So, yes. I do sometimes find myself asking God to take my mother to heaven. To free us of this woman who is neither my mom, nor my dad’s wife. She looks like the woman we once knew………………………….. but Margarita is not there.

She is being eaten alive from within by a parasite so insidious, so nefarious, it doesn’t just take out its host, it takes out entire families.

>>Flickr image from Pareeerica