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

Stylish. Fabulous. Simply splendid. Otherwise known as dementia-ware. This look is available only at Buck & Buck for all of your Alzheimer’s and other demented needs……….

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

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

My mom

A huge thank you to Lori La Bey of Alzheimer’s Speaks for having me on the show last Friday along with Lisa Genova, author of The New York Times best-selling book, Still Alice. This was my first radio interview and I was absolutely thrilled to share airtime with Lori and Lisa.

You can check out the interview here… I came on after Lisa — WOW!

Thanks!

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

She knows me……………… Hanging with mom in bed……… Like we used to do………….it’s 2012…. Another day. Another moment lost. I call it Walking Grief…………

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

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!

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.