Alzheimer’s Documentary Sheds Light on Disease… OR You’re Looking At Me Like I Live Here And I Don’t

Lee applying lipstick
Photo by: Phillip Maisel

Media often plays it soft when it comes to the portrayal of Alzhemier’s disease on TV shows, in the news or in movies………..… that is, they skirt around the complexities surrounding the disease, the emotions, the financial implications, the long-term toll…………. Sure, some works are more adept than others at portraying the effects of dementia………. The short film, My Name is Lisa, hit on some of the more brutal realities of the disease, specifically, the toll on children…………..… Others, well……………….. The TV show Raising Hope superficially touches on it — sort of — with its character Maw-Maw………. of course, her senility is used to get laughs. The movie The Savages annoyed me more than anything else………”irreverent, hilarious”……….. not so much. Away From Her was a beautiful film, but, for me, it was too easy — the character with Alzheimer’s chose to move into a nursing home and her adjustment was, for the most part, seamless. The movie actually left me feeling worse about my own situation………. Why can’t my mother be like her? Am I doing something wrong? God, I wish my mom were like her…….

The truth is, dementia is a hard story to tell. It isn’t a sexy story. There are no survivors, so no happy endings. Alzheimer’s disease and other dementias are incredibly grotesque…….. twisted……. disturbing………. and until we start having an honest, more mainstream conversation about dementia, it will continue to be the disease that gets swept under the rug…………… Let’s face it, no one really wants to talk about “that.”

Until now. Documentary filmmaker Scott Kirschenbaum does talk about “that” in his film, You’re Looking At Me Like I Live Here And I Don’t premiering on PBS’s Independent Lens Thursday, March 29 at 10-pm (check local listings).

That title pretty much sums up this beautifully poignant yet jarring documentary about a woman named Lee Gorewitz who lives at the Traditions Alzheimer’s & Other Dementia Care Unit at the Reutlinger Community for Jewish Living in California.

Kirschenbaum doesn’t do much talking. He doesn’t hold your hand throughout the film. He doesn’t make you feel at ease.

In fact, when the film opens, you can’t help but feel disoriented, even confused because you’re given no sense of direction, but then, that is his point…………….. and then you meet Lee.

Charismatic, delightful, even poetic, Lee takes your hand and guides you into her  world…………. a world of disconnected, fleeting memories………….. a world she’s trying to piece together and navigate in her own way. Lee has Alzheimer’s disease and this is her story…………. a first-person account. We don’t hear from her family, her friends or her doctors — Kirschenbaum did that on purpose. “It needed to be wholly about Lee’s present-day existence within the walls of the Unit.” Watching Lee tell her story is humorous, exhausting and heartbreaking all at once…………… to watch this woman quizzically stare at family photographs, to read a card addressed to “Mom” and not realize she IS mom, to watch her dance and smile, only to later tell another resident that she’s going to die……………..

Kirschenbaum refuses to sugar coat the disease.

We see Lee as she is…………… Kirschenbaum sums it up best: “In the span of minutes, Lee would morph from pensive thinker to gregarious helper, from bubbly mover-and-shaker to morose and sometimes cruel instigator.” His decision as a filmmaker to leave the grotesque intact is brave. As an outsider, it’s often difficult to understand what the individual goes through — as well as their family — until you have witnessed these unsettling scenes unfold.

Lee is a remarkable woman……………. you can’t help but fall in love with her………… you can’t help but want to reach out and comfort her, laugh with her, cry with her……. And despite everything, she’s resilient…………. or maybe she knows she doesn’t have a choice…………… this is her life and she must keep going……………. even as the walls are closing in on her.

“Widowed, cloistered, and slowly undone by her inability to think or speak clearly, Lee has every reason to succumb to the expectations of her conditions. Instead, she defies despondency. When she breaks down, she rebuilds. When she loses words, she summons emotions. And, despite the small defeats of her efforts, she remains an exceptional and resilient soul.”

I talked to Kirschenbaum about his remarkable film below:

There’s no narration. Why did you decide to let Lee tell the story?The goal from the onset was to place the viewer in Lee’s world — in this time of her life — and not rely on her past or someone who lives outside the Alzheimer’s Unit to tell Lee’s story. I wanted to let Lee communicate to the audience. I think, in essence, there is a narrative but it’s not a conventional Hollywood narrative. This is the fragmented reality of Alzheimer’s. There was a method and strategy as to how the scenes were oriented, one after another — as an Alzheimer’s odyssey.

You show the grotesque in your film, which is unusual… why did you decide to go there in your film?
For me, I know if I’m going to explore an Alzheimer’s unit in earnest, the entire continuum of emotions needs to be evidenced in the final film. Just as integral to showing Lee telling a joke in front of a caregiver was showing the most painful images that occur in Alzheimer’s unit. I want the audience to see that there’s a great deal of humanity and to be fair to what actually occurs in that environment, so audiences can be clear on what this world is, so they can hopefully connect with this world on a human-to-human level.

Has this film changed your view on aging?
As a filmmaker, I’m trying to explore difficult and challenging environments. I feel more connected with life and living by making films more than any other work. There was a sense of urgency in making this movie … I know about the emotion and the psychological impact its had on me. I feel a sense of gratitude that I was allowed to make this movie, to befriend Lee and the other residents, and was allowed access to this beautiful and depressing world. I want to be someone who has the capacity to hold space in my life for these kinds of relationships.

You said you wanted to target younger people with this film… Why?
The entire film crew were in their 20s and 30s, so as a young group we wanted to go there… I know some of the most impassioned advocates for Alzheimer’s awareness are young people and I wanted this to be a film that they can rally around and be excited about. In my dream scenario, this movie is for all age groups. This is a reality. Alzheimer’s is not going away. It’s worth everyone’s time to experience this… to get comfortable going to an Alzheimer’s unit or nursing home and trying to connect … We should not ignore our elders no matter how debilitated they are or difficult their situation is.

You’re Looking At Me Like I Live Here And I Don’t will air on PBS’s Independent Lens this Thursday, March 29 at 10-pm (check local listings).

Is Dementia Contagious Or Let’s Talk Genetics

A scary thought has started creeping in………………………… what if her disease is genetic? OK, there’s no family history that I know of, but still……………My mother never had a fighting chance……… she never knew she was sick…………. minus the “I can’t remember this or that” or “I don’t know where I put this or that” or the name game, “David, Lisa, Anita, Vilma, KATHY”………………. she never once said, “Maybe I have something. Maybe I have Alzheimer’s disease.”

Maybe she just didn’t want to go there……………………..

Unfortunately, a lot of people who develop frontotemporal dementia (or Pick’s disease) don’t even realize they have it. It is literally a thief in the night……………. that takes everything. The idea that something could ravage your grey matter without you even knowing is beyond frightening……………. Imagine, all of a sudden, the people around you — your own family — change. They treat you differently, begin to control everything around you, tell you that you can no longer perform tasks you once performed with ease, take away the keys………………. it’s the kind of plot line that only Hollywood could concoct……………. it’s not you; it’s them………………

My mother seemed oblivious that anything was wrong. Of course, when life had to change because of her disease, she would become incredulous, not understanding that we were trying to keep her (and everyone else) safe. Taking away the car keys was a total trauma………………. she could not understand why we would take away the keys. In her mind, she was a perfectly safe driver. And then she tried to buy a car for $1………….. That was, according to my mom, the deal she had negotiated for herself………………

$1.

That thought, that in my mind, I’m OK, but everyone else is clearly against me seems wholly unfathomable, a total nightmare………………. I’d like to think that I’m (mostly) logical about things, but to think that I may not be able to distinguish reality from dementia is beyond horrifying………. There are no words.

I’ve contemplated the idea of calling it a day should I ever face such a diagnosis…………….. After all, I’ve been in the belly of the beast and it’s not how I want to go out……………. dementia can be a gruesome disease; it’s frightening, tragic, you’re always in the dark trying to feel your way around, struggling for the familiar, grasping at something that’s really nothing…………….

The Catholic in me would never go through with it for fear of burning in Hell or coming back in my next life as a roach (that’s the yogini in me)……………….. still, the thought dances around my mind from time to time………………… and then I realized, what if I don’t even realize its wrapped its tentacles around my grey matter?

Scary stuff……………… scarier still is knowing that dementia is not in the news, it’s not part of the daily conversation, no one seems concerned that this disease is going to overwhelm our economy……….. NEWS FLASH: This is a costly disease……..long-term care can cost thousands and thousands of dollars per month..…….. Even more disturbing (or annoying), most people don’t even know that there are other forms of dementia besides Alzheimer’s disease………… and then there’s matter of diagnosing it. Correctly.

I have no idea how I would react to any kind of diagnosis like dementia……. if I’m even able to comprehend what the doctor says…………….. I remember my mom sitting there starring, even smiling at times, as the doctor said “Alzheimer’s” repeatedly…………………….

……………..she had no idea what the fates had in store for her.

>>Flickr pic by Meredith Farmer

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

Mom Gets Kick Out; God Laughs

Photo by Meredith Farmer

I had so many noble ideas for this week’s post….. I was feeling good. I started thinking about how this — life — was some sort of test, a means of proving one’s ability to persevere and not succumb to the easy-outs; because by staying the course, we’ll somehow achieve spiritual bonus points. I was arrogant, I suppose…….. I thought I’d done so well, not losing it that is……………..I mean, I know people who were tumbling into a deep pit of depression and they had nothing significant going on their life — other than too much time to think………………….. I was proud of myself. I thought we were going to be OK for at least the rest of the month until tonight, when I was informed that my mother had 30 days to pack her stuff and leave the home.

Mom yells. She spits. She does have a bit of a poopy reputation.

Other residents have been complaining. Complaining to their families. I suppose it boils down to money — why risk losing one or two relatively easy residents versus my mother? She has never been easy to deal with. Her disease is especially trying……….. I would probably do the same. Nursing home care is a business. A big business that’s only going to boom over time. I got word at 5:00 p.m. I started calling facilities as soon as I hung up the phone. Unfortunately, I am limited in terms of where I can place her. Her behaviors, the result of frontotemporal dementia, mean I can’t place her just anywhere………… I need to find a behavioral unit. And those are few and far between here…………… but she’s not violent, so I risk placing her in a home where she could be the victim. My mom’s behaviors are of the benign variety……………. she yells, she spits, she gets into her poop from time to time……………… but they are behaviors and it seems things are pretty black and white when it comes to nursing homes………………………… people do not want to deal with behaviors.

So here I am. I have no idea how my father is going to take this. I dread the conversation; I just don’t know. But there’s no one else………………………..

I saw a shaman once who told me that the source of my mother’s disease (and my own) could be the result of an agreement we made in another life (I know, what was I thinking? Why would I agree to such a dumb pact?)……………. I can’t help but think about that…………. did I do something horribly wrong. Is this my punishment………….. in this lifetime? Or was I perhaps some saint who agreed to participate in this life with my mother, who, clearly, was also a saint in order to voluntarily go through this.

Or, is this the act of God; a vengeful God……………. one who is enjoying this…………… watching his puppets suffer.

(I don’t believe in a loving God. That makes no sense once you step back and ponder all the suffering going on in the world).

Or maybe this is Hell. People experiencing varying degrees of Hell, but Hell……..

Whatever this is, I am less fearful of death………………. Sometimes, I think, well, at least all of this will be over with and death is probably less stressful…………….. It’s terribly tragic way to think. I know that.

Last week, I was accused of wanting to sedate my mother by a psych nurse practitioner’s partner. My mother was grinding her teeth so badly, you could hear it if you were standing 3 feet away from her. It pained me. It kept me up at night. I asked the nurse practitioner if she could do something; increase her medication; something; anything……………. she dropped my mother, said I should find someone who shares my “philosophy” of caregiving and then that response by her colleague. Talk about knife in gut…………. I took mom back to Banner Alzheimer’s Institute that same week……………….. they looked at what the nurse practitioner was giving her……………………….. it was wrong; they added and increased her meds.

They also removed the Robitusin PM that was being given for her cough (cough? what cough? I called the home…. oh, she has a cough once in a while…. it’s as needed.). 

Yeah. A cough.

Then, one week later, we get the boot. I don’t know how much more I can take…………. I can’t even imagine what “normal” feels like. The glass is always half empty — there’s not point in being optimistic about things because they simply do not work out when it comes to this disease……………………

I always wanted children, I used to day dream about being a mom, I had baby names picked out, I thought about outfits and how I would dress my kids………………..and now I can’t even see that as a possibility……………… it’s just slipping away. I just can’t fathom doing all of this and raising a baby. I have my hands full with two parents, a job, a relationship, friendships (I feel like I suck at all of the above most days)………………

And I’m afraid that God will continue to punish me. I truly believe that he will give me a child that has some terrible disease…………….. and you can’t give them back once they’re out. Thing is, I don’t think I can continue to fight for another person. I can’t do it. I can’t care for a sick person……………not for the rest of their life. I don’t know how people caregive a child into adulthood…………… Still, it breaks my heart every time I see a baby picture, a big belly, an ultrasound or anything of the sort…………………. it reminds me of what I don’t think I’ll ever have.

I will be 35 in three weeks………………. and this is my life.

I’m tired.

>>Flickr pic by Meredith Farmer

A Letter to Demi Moore and Other Exhausted Celebs…

Photo by OlestC

Dear Demi Moore (and every other well-to-do celebrity suffering from “exhaustion”),

I wanted to write you this note to express my sadness at your current condition. I’ve always enjoyed your work (even the stuff that was panned, because it was you) and admired your strength — you came from nothing and created a wondrous life for yourself. It was, and still is, very rare to see an actor make it on their own, without parental connections, etc. Not only that, but by your own admission, your relationship with your mother was terribly strained, yet you persevered and you were with her when she passed away — absolutely, positively admirable.

You earned your star.

All that said, I wanted to tell you — and many of your colleagues in showbiz — how unimpressed I am with you inability to cope with life’s hardships. I can’t help but roll my eyes at your latest cry for help……… I am not going to pretend to know what is going on in your orbit (a cheating spouse? whip-its? really?), but from my own brief fling in the world of tabloid (ahem) “journalism,” sources are usually publicists, people who are somehow connected to you.

Ms. Moore, heartbreak is terrible and any kind of betrayal is absolutely devastating — no, crushing. But I implore you to take a moment to stop………………… to step outside of your gilded cage and step into my iron cage or anyone else who is struggling to keep their own emotional head above water. Life is hard. Life is suffering, but that’s LIFE.

In the most recent issue of Harper’s Bazar, you describe yourself as a seeker, “a seeker of the truth.” Go inside and take a good, hard look………………… and then digest it.

You are blessed…………………….. WAY more than most people in this country, and then there’s the planet to consider……………………… suffering is more common than not, so to lose yourself to your own demons, well, it’s a pity and frankly, it’s something most caregivers of demented loved ones wish they could do.

But we can’t.

We are the ones who must carry on. We are the ones who have to keep going, no matter how much we’d love to hospitalize ourselves for exhaustion. We are the one’s who have to go to work day-in and day-out to earn in a year what you likely spend in a month. We are the one’s who sit on our loved ones bedside and watch the daily horrors of dementia unfold before us. We are the ones who make do…… it is what it is. We are the ones who swallow our medicine and deal with whatever this grotesque disease throws at us……………………… including poop.

In that same article you said that “any kind of unhappiness, conflict, or chaos … is fear-based, insecure behavior that is playing out of some kind of pattern from our childhood.”

I take it, that your unhappiness is rooted in your childhood…………….. well, I am not always happy. I am probably more unhappy than happy and I can tell you, while I may have had issues with my own parents growing up, my unhappiness does not stem from that……………. from the past. It stems from the fact that my mother is slowly dying from a horrible disease that is consuming her gray matter…………………. I am unhappy because her disease has taken a toll on my father, too. I fear for my father. I fear that his sadness might be so profound that it will one day consume him. I am unhappy because I do not have parents who I can talk to about my life, my work, my fears, my joys, etcetera etcetera etcetera……………but that’s life. And life is suffering.

And life can break you……………………….. if you let it.

I refuse to let it.

I wanted to write this letter (it’s actually a blog post) to you and to all of the over-paid, over-glorified celebrities who seek solace in a bottle of booze, drugs, or whatever vice floats your boat, because you know nothing of pain……………… your suffering is gilded.

You (ALL) seek fortune and glory and then you shun it. But here’s a news flash: I helped you afford your homes (yes, plural), the designer duds you sport on your back even when you’re just going to Whole Foods, your children’s posh education……………….. me and my movie ticket (and in the case of other famous people, CDs, magazines, etc).

You read a few books about spirituality, life and it’s meaning and wear a red string around your wrist…………….. the masses follow you, they want to be like YOU………….. and when life hurls a pile of caca at you — a big pile and in public…………… and you let it defeat you. You appear to feel sorry for yourself…………….

Countless caregivers come face-to-face with the devil himself, every single day when they care for a demented loved one………………and I am sure each one would love to call it a day. To say, I don’t want to do this anymore. To walk away from their daily horrors. To check themselves into a place for exhaustion. Because believe me, these people are TIRED.

Frankly, I would love to regain my balance with lots of yoga, a personal chef and views of the Pacific………………… sounds positively healthy.

Alas, I live in an iron cage called reality.

Sincerely,

A girl who really liked you in Ghost.

P.S. I hope you feel better soon.

>>Flickr pic by OlestC

Finding a Cure for Alzheimer’s Or How to View the Glass as Half Empty

Photo by Meredith Farmer

There’s been a lot of stories in the news this week about NAPA and a push to find a cure for Alzheimer’s disease by 2025. USA Today had an article entitled, U.S. Launches National War on Alzheimer’s.

Well, we’ve seen what happens when America goes to war.

I absolutely applaud the push towards massive action against this disease, I applaud the draft frame work put together by the Department of Health and Human Services, but — insert glass-half-empty-HERE — I can’t help but think it’s just not enough and we’re not addressing the big issues…………….

Caregiving right now. Today.

There simply are not enough resources for primary caregivers NOW. There is simply not enough emphasis on dementia, dementia care, behaviors, etc TODAY. Let’s be honest, we have yet to develop a “cure” for cancer or for AIDS. We have wonderfully beneficial treatments that help prolong life, and yes, we can eradicate certain cancers, but it’s often a brutal treatment process that can take time and a serious toll on one’s health.

I am scared that we are giving desperate caregivers false hope about a cure…………….. I am scared that we are giving young adult caregivers who may develop the disease themselves FALSE HOPE. And if we do find a cure, how much will it cost? Will insurance actually cover your cure? I wonder…………………

I see so many desperate people on Facebook, begging for help, for a cure………………….. WE ARE DESPERATE!

Science has a very primitive understanding of the human brain…………..if you ask me. But then, I’m just a writer…………… still, I say everyone is different. No two bodies are alike. Some treatments work; others don’t or won’t. The human brain is complex. A disease like Alzheimer or FTD affect people differently. You mom may exhibit classic symptoms whereas mine never did. Think about something as simple as Aspirin……………….. it may work to treat your headache, but it won’t put a dent in mine — thank God for Advil.

And what about those individuals dying from some other grotesque form of dementia?

Vascular dementia
Mixed dementia
Frontotemporal dementia / Pick’s disease
Dementia with Lewy bodies
Parkinson’s disease
Huntington’s Disease

The other thing I can’t help but think about is cost. Our current Congress refuses to pay for ANYTHING unless we CUT. So, seriously, how are we going to pay for this? Dementia care costs A LOT of money…………of course, if you’re in Congress this is probably a moot point for you since you have the best health care my tax dollars can afford and a pension to boot…………… In-home care is not free. Most middle-class families cannot balance a full-time job and be a full-time caregiver, and frankly, FMLA is simply not enough time……………….Dementia care is a family disease. It takes a village to care for a demented loved one, and yet, many of us are scattered…………….. strangers come and go………………. they have no real investment in your loved one.

My dad retired to be a full-time caregiver. My mother’s type of dementia, FTD, made it difficult to have a random stranger care for her and she certainly would not let anyone except her husband bathe her — even that was a challenge. She could be combative. She would try to leave the house. She was, at times, very difficult to care for………………. and what about other solutions, you say? Well, the adult day care center said she could not come back because she spit on the floor — not very hygienic. We had little choice about how we could care for my mom. I tried to take her to another adult day care that focused on dementia care……………. it was a no-go. She would not sit still as they read the daily newspaper. She wanted to go home. At least she liked the other place. She enjoyed going.

Dementia patients are not alike. Some will sit quietly. MOST will not.

I am scared for the people who will soon be dealing with this disease because the majority of Americans will not be able to afford adequate care. No one can afford to pay for a nursing home out of pocket, especially if you have a severely demented loved one. My dream nursing home (hey, you might have a dream pre-school for your kid) runs around $7,000 a MONTH. Even if you have Medicaid, services are often limited………. and then let’s talk about the kind of care you get. Most state-approved caregivers/babysitters are not trained to deal with behaviors. And frankly, if you’re making minimum-wage or around that, who would want the job?

Thank you Uncle Sam for putting together a rough draft of what WE the People need when it comes to dementia care and support. Your draft covered pretty much everything. Now let’s see how you’re going to make it a reality; and let’s see if our ineffective (I see no change coming anytime soon) Congress will actually pay for it.


>>Flickr pic by Meredith Farmer

Walking Grief… Or Coping With the Act of Dying

Image by Meredith Farmer

I’ve been contemplating this idea of “walking grief” lately…….. mostly, I’m just trying to describe how I feel………….. I’m not always sad, I have sad days, but I’m not sad. On the flipside, I’m not happy either; I have happy moments; moments that make me laugh; but I would not call this phase of my life happy or blissful. So I’ve been playing with the term, “walking grief”…………… because I’m not going through the traditional stages of grief — denial, anger, bargaining, depression, acceptance — but rather a mix of almost all of the above (I’ve never bargained with God; I’ve only threatened to beat him up) and then some. I thought there had to be a better word…………….. something that summed it all up because some days you’re angry. Other days you feel depressed. Some days, you just accept it…………………… coping with a parent who is dying a very slow, grotesque death takes a tremendous emotional and even physical toll.

There is no easy recovery from it. You see things, hear things, smell things…………………. it’s traumatic. I don’t want to sound like a victim here. I’m not. My mom is. I’m just here, going through this experience with her. But I’m not gonna lie………….. it’s been brutal; brutal enough where I tell myself, “Kat, it could be worse…. you could be in a war zone or living in place where you’re stoned to death because you’re a woman…”

There is always something worse.

I had lunch with my friend Lea the other day and she made a wonderful comment to me that just clicked………………………… she said that in our society we don’t embrace the duality……………….. that sometimes we will go through periods of just sadness and that’s OK. That you need those moments to balance out the happy.

As a society, we don’t really talk about the sad, about death…………. we avoid it. We don’t talk about it. We are not allowed to dwell in it. To feel it. To sit with it. We bury it. And then we move on. The problem is, those rules don’t really apply with dementia (or in general if you ask me)…………. every time I visit my mother, any progress I’ve made toward feeling “normal” are swept away. So I’m not going to try. I am going to walk my grief. This is where I’m at. That’s it. I am not going to always see the bright side of things. I don’t want to. I am here. I am feeling a blur of emotion…………………………. and I think that’s probably normal.

I am in walking grief and I kindly ask you to respect that.

Flickr pic by Meredith Farmer

A Man Walked Into a Bar With Adult Diapers On……..

I’ve been hearing a lot of adult diaper jokes lately………………… I don’t know if that’s just how the universe works because the universe, in all of its infinite wisdom, is actually a really big dick……………………………. or I just happen to be more in tune with adult diapers since I buy them often.

I don’t find adult diaper jokes very funny…………………… when they do come up, I fake-laugh and hope the subject is changed. Promptly………………… Look, I try to have a good sense of humor about my mom and her disease (my new joke is that trying to get her this really good nursing home is like trying to get a kid into private school……………….. OK, it’s funnier when I say it and you see my face), but adult diapers, well, let’s face it, of all of the humiliations we humans have to endure as we get older, sitting in a mushy pile of your own caca, waiting for a stranger to change you is surely at the top of the list.

Alas, most people don’t really think the adult diaper thing through…………. for some weird reason, they associate adult diapers with pee — just PEE………………….. because somehow you’ll be able to get yourself to the toilet to poop??????

The other night, we were at a favorite restaurant having a bite to eat and a glass of vino………………………………. the owner of the restaurant (we’re chums) came by the bar to say hello……………………. the conversation (I had NOTHING to do with this) turned to aging, retirement, getting older and, naturally, adult diapers (the universe laughs)………………….. the owner said that he’s already told his family that he doesn’t want to go to a nursing home and that he wants his family to change him if it ever gets to that point where he develops, you know, The Alzheimer’s, and has to wear adult diapers………………………….. he doesn’t want complete strangers cleaning up his mess………………………….that should he ever become difficult, he’d be OK with his family smacking him and putting him in a corner………………………………

I smiled.

Fake laugh.

Jon turned to look at me.

I think he wants to make sure I’m not twitching……………. or seething with rage.

Think Pulp Fiction.

“Bitch, be cool.”

I didn’t want to tell him that my mom was being cared for by strangers. That my mom is in adult diapers and it’s not easy to change out your own parent’s poopy diapers. That you can’t just slap your parent when they act out…………… that most dementia patients don’t just sit there quietly (I wish!)………….. that most families, after a point, cannot take care of their loved one………………….. that asking your daughters and wife to do this for you is like asking them to take give up a limb…………………. that your daughters that you worked so hard for will have to make huge sacrifices to care for you and your poopy diapers…………………………..

Getting old is a scary prospect. I think about it a lot. I think about how I’m going to pay for my own care and I’m 34. The majority of us avoid the topic all together, or we simply hope our kids will be there to pick up the dirty work of caregiving…………………….. clearly. I don’t have kids. And if I did, I wouldn’t bank on having kids who would step in and make certain sacrifices on my behalf…………. nor would I want my child to change out my diaper…………………… I often wonder if I would be able to do it……………………. to call it a day if I knew that my days were only going to get worse. I can’t help but wonder if there is a God that would punish me by turning me into a roach in my next life………………. or condemn me to an eternity in Hell…………my good deeds on Earth erased because I boldly ended my own life so I would not have to suffer a fate like my mother’s.

We left the restaurant and I didn’t say a word. I think I was too cold to care. “Turn up the heat, it’s freezing!” I let that entire conversation slide off my back.

Do I think that man is selfish. Yes. Do I like his white beans and escarole? Yes.

That’s life. People make adult diaper jokes and they don’t think about what it means to wear an adult diaper………………… but then again, if we all fretted about our destinies, what would be the point of life?

I can’t help but fret. For the last 7 years, her disease has been my life. I can’t help but think about my own future, my fate…………….. is it hereditary? Will I get this too?

Life is a toss-up.

Sometimes you get a really shitty hand.

>>Flickr pic by the tremendously talented Meredith Farmer

The Moment I Knew………. The Moment I Entered Denial

My Moment

Some exciting news came in the mail today…………………………. my contributor’s copy of the new book, THE MOMENT by Larry Smith of Smith Magazine (finally!) arrived. Over a year ago, Larry asked me to contribute something to this wonderful project he was working on, which is out and available to buy…………………… THE MOMENT contains stories by writers and artists — both famous and obscure (like me) — who share how a single moment changed their lives……… in an instant and forever.

Or as Larry puts it…………….. “The turning points, revelations, epiphanies, dramatic changes, the opening or closing of a door—in a life, a career, a love—can occur in a single glorious, terrible, unpredictable, serendipitous, crucial, calamitous, chaotic, amazing… Moment”

My moment revolves around my mom…………………………….. and the moment I knew; the moment I went straight to denial.

 

A huge thanks to Larry for including me in this book. I am beyond humbled. Larry, you always gave me a shot and you’ve never doubted me. Thank you!

 

Jack Kevorkian & Alzheimer’s Disease

“I have decided for the following reasons to take my own life. This is a decision taken in a normal state of mind and is fully considered. I have Alzheimer’s disease and do not want to let it progress any further. I don’t choose to put my family or myself through the agony of this terrible disease.” ~ Janet Elaine Adkins

Janet asked a retired Michigan pathologist to help her to die.

His name was Jack Kevorkian.

Something to think about.

Should early-stage dementia patients have a choice?

I don’t know the answer.

Some might argue that my mom is not really suffering…… she has no idea what’s going on.

She’s lost in the fog.

And for her, this could never be an option…….. she is incapable of making this kind of choice.

But is it right………… is it humane…………. to let the minds of our loved ones be savagely raped by a disease like AD or FTD?

Something to think about.

 

I Want To Fistfight God In Heaven

Just found out about another of mother’s new habits today…………….. apparently, she digs into her diaper, pulls out her own feces and tries to eat it.

OK, not just tries, but has actually had some success.

I sat at the counter staring at the fake granite as the owner of the home and a caregiver told me about my mom’s latest behavior…………………. fatigue immediately came over me. I wanted to leave. I hadn’t even seen her yet and I just wanted to bail.

I can’t do this anymore. I don’t want to do this anymore.

My mom eats her poop.

Think about that. Remember that next time you have a shitty day at the office.

My

Mom

Eats

Poop

I can’t help but think about life and its purpose……………. or in my mom’s case, the lack of purpose. We hear people passionately fight about life, its meaning, blah blah blah……………. but what if there is no meaning. No plan. No God.

What if you’re simply a breathing pile of particles………………….. that’s it. Nothing more.

You have no special purpose in this life except to survive, like other creatures.

There is no God. And if there is a God. God is cruel. God is not merciful. God likes to sit back and watch reality TV…………………………… he’s watching your life unfold and doing nothing to stop bad things from happening to you.

God probably Tivo’s your life when he’s watching the mess that is my life play out.

Because it’s funny to see one of his most devout followers eat her own shit.

As I was driving home, I was think about God up in heaven…………………… and then I started thinking about fistfighting him. In heaven. His turf. I thought about pummeling him. For like hours. It felt good.

I probably even kicked him while the big guy was down.

Kick……………………

Stomp………………………..

Punch………………………………

I want to fistfight God.

I want God to feel my pain.

I want God to pay for what he’s done to my mother.

 

>>Flickr pic by my fave…. Meredith Farmer

And Then The Other Shoe Dropped

My grandpa passed away over a week ago. This, following everything with my mom…………………….. he was 94. We knew his life was coming to an end, but to have it happen so soon after we placed my mom, and in a way lost my mom…………………. I know my mom is in a much better environment, a place where she can be properly taken care of by people who are trained to deal with people like her………………… people who don’t wretch when they smell poop; timing-wise, well, her placement was a blessing because my father and I could attend grandpa’s (his dad’s) memorial service in Minnesota.

There’s no way we could both go and say goodbye if she were still at home……………..

It’s this kind of outcome or timing in life that makes me wonder if there is a God, because clearly he tossed me a most-fucked-up bone, but a bone none-the-less.

Still, the last few weeks have left me feeling, I don’t know, quiet.

And sometimes stingingly agitated.

There’s a part of me that’s incredibly paranoid about what’s next — what could possibly happen next? Will it be me? Will something happen to me? I worry about my health.

But then, I try to calm my mind. To breathe, which is actually a very difficult task.

What transpired over the past few weeks is simply a part of life………………… my life. And everything with my mom has led me to this point where I should be able to cope with her placement. To walk away when she screams, DESPIERTA AMERICA! because she wants to follow me out the door.

The thing is, something is troubling me and I can’t put my finger on it……………. there’s something off, something that leaves me feeling disconcerted.

My emotional compass feels out of whack.

I try to remind myself that the life I live is better than lives led by 90% of the people on this planet. It’s a unfair comparison to make, because I will always lose — someone is suffering more than I could ever imagine, but still………………….. humans can cope and deal with a lot. That’s how we were designed.

At least that’s what I think.

Perhaps we can ingest a lot of shit, but sometimes it takes a while to digest it…………..

I guess that’s where I’m at.

Digesting everything that has transpired over the last few weeks………………

Two different passings.

 

>>Flickr pic by Meredith Farmer

Part Two… Behaviors Vs. Behaviors

Almost anyone dying from dementia suffers from behaviors. Behaviors are simply part of the game when it comes to this disease… BUT, there are “behaviors” and then there are “behaviors….” something no one can clearly define.

Here is my personal definition (and opinion because I’m a writer, not a doctor): Bad behavior – throwing your feces at someone or taking a sharp object and using it to attack another human being/caregiver. Tolerable behavior – spitting on the floor. 

My mother suffers from the latter………….. she spits on the floor, especially when she is really agitated. It’s how she acts out. She’ll yell, “Despierta America!!!” when people are doing things to her like thrusting a catheter inside her. She hates showers, so she’ll cause a ruckus. OK, it is important to try and put yourself in my mother’s shoes. She has no idea what is going on around her. She CANNOT communicate. She cannot tell me if she’s in pain. She cannot tell me if she’s happy.

The only two places on the planet right now that are remotely familiar to her are her house and her church.

Imaging being picked up and dropped off in the middle of Jalalabad, Afghanistan. You can’t speak the language, you have no idea who is on your side, who wants to help you, you don’t know where to go…. people approach you, what would you do? 

You would probably behave VERY inappropriately.

There was a time when my mother did act out. She would push me over to run to her boyfriend, The Priest. Sometimes, when I would try to restrain her from running into the church aisle, she accidentally hurt me………. wrestling in a tight pew can cause bruising and minor scratches. There was also a time when my mom would do things to get out of our locked house (she wanted to walk to church, her happy place)…………….. She took a pair of scissors and cut the screen door to try and get out. She used to spit — a lot. She would use the stove or microwave objects that clearly state on the label, “Do Not Microwave or You Will Burn Down Your House.”

My mother most definitely went through a very, very, very difficult stage. She gives new meaning to the Terrible Two’s………….. more like Terrible 70s.

Today, she’s mostly mellow. Medication helps that, but lately, even without the meds, she’s kinda quiet — except when you give her a shower……………… most demented people HATE water……………….. poke and prod her, force her to eat something she just doesn’t like, or you steal her hot water bottle……………. the thing is like her baby blanket. 

Or when she sees me. She talks to me….. Despierta America, la fruta, la fruta. Despierta America, la fruta, la fruta. Despierta America, la fruta, la fruta.

I understand.

After being told my deadline at the hospital, I got to work. I started making calls………. and then a miracle: ALTCS came through at around 330pm that same day she was rushed to the ER……….. I could place my mother. Somewhere.

Now in the name of honesty, when dealing with any type of home, you have to tell people what your parent is like because if they aren’t a good fit at the facility, it’s just a bad situation for everyone.

I spoke to one woman and told her about my mom’s current “behaviors.”

Her (paraphrased) response: Well, you know sometimes with behaviors, they end up in a place like St. Luke’s, which deals with behaviors.

My (paraphrased) response: Wait. St. Luke’s as in the psych ward? No. No. My mom ended up there a few years ago and they wanted to do shock treatment. No, I won’t do that.

Her (paraphrased) response: You know sometimes you have to be open to other solutions…. I mean, would you rather have your mother sedated all the time or maybe something like shock treatment might improve her quality of life. You know, shock treatment is not what you think… it has evolved a lot.

My (paraphrased) response: Uh-huh. Um OK. Well I’m still thinking. OK. I’ll call you back.

That’s the challenge. Right there……. that is the challenge. This is my mother and you have the nerve to bring up shock treatment — I mean, electroconvulsive therapy?

Makes you wonder how many of these folks would strap down their own parent (or child) and “medically” induce seizures so they can eventually be tolerable to their caregivers?

Behaviors are indeed difficult and tricky…….. but are we really this savage, this primitive?

A conventional nursing home was likely not going to cut it (I had called another place and was met with a similar response and then she told me they had no beds)………………. and since the nursing home of my dreams had no beds (they take in some of the trickiest patients, and have some amazing success stories sans ECT)………………. I started exploring group homes.

Perhaps a home-like setting would be the ticket. Still, I kept her on a waiting list for my dream nursing home…………….. just in case now and for the future.

I can’t tell you how difficult this was. At this point, I had maybe less than 24 hours to find something. Some homes were so-so — tolerable. Others reminded me of Deliverance. The woman at one place had only three teeth, which is fine, except I wondered, if you can’t even take care and maintain your own oral hygiene, how can you possibly care for my mother? Another place was amazing, stunning, perfect……… Dad and I agreed: this would be the place. I called less than hour after seeing the house and no call back. I texted. She texted back saying she’d call me later. I told her I wanted the room. Loved the house. “Tx,” she replied. I thought I had found the place. By 7pm we connect. “Um, I am so sorry but the room was sold, but I have a place in Surprise and then I will have availability in four weeks,” she tells me in her Eastern European accent.

Four weeks? You sold the room? Surprise?

The running joke with Surprise is that when you arrive in Surprise, you say, “Surprise, you’re in California!!!” It’s that far from downtown Phoenix.

I was desperate. I hadn’t found anything yet. I agreed to go to Surprise the following day.

In the meantime, dad found a place near his house……………. literally a couple blocks away. He wanted her close. He wanted to place her there. At this point, I was beyond pissed. I had had it. I was fed up. Tired. Smelly. Constipated. And sick and tired of my life.

I agreed to see the place.

I liked it.

It didn’t smell sick.

It didn’t smell over-perfumed.

It felt normal.

Bright.

Airy.

Normal.

I over emphasized her behaviors.

They didn’t seem to mind. They seemed capable. The house was simple, yet very clean. The residence didn’t look as though they were housed in some wretched cage. It was close too………….. always key.

OK.

Eastern European chick called me Monday morning to tell me that a room at the original house had opened up. Miracle. “Please come to my house. Please. I have 16 years of experience. Please bring your mom here,” she said.

Fuck off.

I didn’t say that. I thought it.

>>Flickr pic by Howzey

Part One… The Beginning of the End

Life with my demented mom was proceeding rather smoothly in recent days………………. by smoothly, I mean mostly bumpy, lots of twists and turns, blind spots and a few “watch for falling rocks” signs dotting the road………….. And then she drank dish soap. The trauma of vomiting and ingesting something that should never ever be ingested took its toll. She was bed-ridden, refused to eat, slept for hours on end, and it all came to a head last Friday. I came over after calling the house………… my dad and I were supposed to have lunch…. I was hoping she would feel better by now….

“Um, yeah, Kath, I can’t get her out of bed. She peed in the bed.” I left work and headed over. I thought I could fix this. I’m the fixer in the family. I fix things when they go horribly awry. I tried to get her up, gave her some Pedialyte, and finally decided to call 911.

A truck carrying what seemed like a dozen first responders came to the house….. they took her vitals, tried to talk to her (um, I said she is severely demented), and then we waited for the ambulance to come. Small talk is always awkward in these circumstances……. So, when did she get sick? How long has it been going on? Are you an only child? I was sitting on the bed right next to my mother who was still lying in her own urine. She had refused to move and I couldn’t push her over………. she’s still stronger than me. What a sight.

Until this blog, I’ve mostly omitted what went down, instead focusing on the dreamy EMT who tended to my mom….. EMT Scott. It’s easier to focus on the mundane and mild versus the traumatic and grotesque. It’s also probably best for my own mental state. No one should have to see their parent in such a horrifying way.

Meantime, I wondered what they would tell their families when they got home that night….. Christ, you won’t believe what we walked in on. What a fucking mess. What the fuck is wrong with people?…. In the ambulance, I apologized to one of the guy who was riding in the back with me…. I tried to explain my situation to him. “It’s cool, don’t worry, you can’t even imagine what we see…. this was nothing,” he tells me.

I forced myself to believe him.

I wonder what his family is like………..

Soap, as it turns out, wasn’t the issue….. Fun fact: soap goes right through you, so manga!! Eat all the soap you want. You’ll puke it or poop it out. But it won’t kill you.

We arrived at the ER around 11 or 11:30am………. several tests, a shot of Ativan and a catheter later, and nothing. There was nothing wrong with her except that she was dehydrated. And demented. Severely demented.

And by severely demented, I mean severely demented.

Of course, her disease and dehydration didn’t really matter……………. what mattered was the insurance company. And the insurance company was apparently saying that mom needed to be released like the next day. A nurse asks me if we can take her to a group home.

This is not how I planned to place my mom.

A group home?

She has a catheter inside of her body. She has an IV. She can’t move. You want me to find a group home so you can discharge her less than 24 hours later? Um. Fuck you. She’s staying. I will not be rushed into anything…. not again.

Sarah the social worker comes is…. she’s cool. I explain the situation….. At this point, mom can’t go home. Dad can’t handle her anymore, it’s taken a severe toll on his well-being. And clearly, she can get into anything. It’s time for her to be placed, but a few pieces of my plan were not yet in place……. namely, no ALTCS, Arizona’s Medicaid. We were “ALTCS pending.” Dreadful status and NOT what a home wants to hear………… So, I might be able to pay you, just not yet. Maybe next week. But can you like take my mom and take good care of her?

The truth is, it’s a business…. but I’ll get into that later.

I told Sarah where I wanted my mom to go….. I had researched this place. I had a plan to essentially get her used to this place…………………. What happened next was always a possibility. I was just hoping God was on my side.

Man plans. God laughs.

There are no beds and there’s a waiting list. 

And so began the mad rush to find a group home, a nursing home, a place that would take my mom……… I hate deadlines. I write for a living and deadlines are a part of my life. Granted, I do better with deadlines, but this deadline was bullshit.

>>Flickr pic by Elycefeliz

Alzheimer’s Disease… Facts, Figures and What You Can Do