Hey God, She’s Dying. Where Are You?

I’m still coming to terms with the idea that my mom is dying. It hardly seems possible. I mean, I knew, eventually, she would die. But death felt faraway. It still feels far away. If she is dying, it’ll take time. My mom was in OK shape, physically, before her sudden decline; she was decently hydrated, and like I said, the woman has a knack from coming back from the brink. She’s done it before. Why couldn’t she do it again? Never mind the fact that she hasn’t really eaten in six days … just a few bites of sorbet and sips of water through a plastic pipette.

It doesn’t feel like she’s dying. I don’t feel an overwhelming urge to sit by her bedside until she finally passes away. Maybe I should, but what is the point? Nothing is happening. She’s lying there, corpse-like. Sometimes her eyes will open, and then she’ll fall asleep again — eyes still open. I can tell she’s sleeping because she starts snoring. I don’t know what to do with myself, so I squeeze out a large dollop of citrus-ginger scented hand lotion and quietly massage her arms and hands. I say a few prayers, tell her it’s OK to leave this world. And then I shake my fist at God.

Really, you’re going to drag this out to the bitter end, huh? 

It has been ten years — give or take — since I noticed something was wrong with my mother. That’s more than 3,000 days. And here we are. Waiting. Waiting on Him. He must be Latin, just like us… we’re always late.

My mother’s family is very religious. Everyone is praying for her. And if they’re not praying for her, they’re thinking of her. There are a lot of thoughts and prayers are floating around … “You’re in my thoughts,” “Recite this prayer,” “Tell her we love her.” I’ve also been told that God will take her when he’s ready. I realize he’s very busy these days, what with mankind slaughtering one another (in His name), but surely he can move her up the list… I see it sort of like a transplant list. He’s transplanting her from Earth to Heaven. But this dilly-daddling is total bullshit. I find it difficult to believe in a loving, kind God when a) he takes his time escorting her through the pearly gates of heaven and b) this is how he saw fit to treat her these last ten years. With a terribly grotesque disease that has rotted out her brain. My mother who devoted herself to her church and to God. Frankly, I’m surprised the woman never became a nun. A life of prayer would have suited her, I think.

So here we are waiting. Waiting for her to bounce back and resume a life of nothing or waiting for her to die. Peacefully, I hope. And in a timely fashion.

So, She’s Dying

It was 7:30p.m. last Thursday when I called my mom’s doctor. “I think she’s dying,” she said. I was sort of stunned. I’ve been waiting to hear these words for a very long time. I don’t remember exactly what came out of my mouth. At that point, my mom hadn’t eaten for three days. She had a fever, too. The doctor didn’t know exactly what was wrong. She thought it was something viral, a stomach bug. A few days before, she was vomiting and had diarrhea. I told her that I didn’t want to treat for anything. I just wanted her to be comfortable as possible. Random feelings started bubbling up… guilt (who prays to receive such a phone call?), relief (finally, this has gone on long enough), sadness (my mother is dying) and more guilt (did I do enough?). And then, I felt fear. Fear that she would rebound. That this was just another false alarm. My mother has been close to the brink before, only to come back. She’s like the Terminator.

I spent most of yesterday with my mother. She was so weak, frail. But her skin was soft and smooth. I kept rubbing her her forearm. I don’t think I’ve ever felt skin so soft. I held her hand. I told her it was ok to go. That things here would be fine. I prayed the Our Father in Spanish (I cheated and used my phone. I had forgotten the words). I showed her videos of her granddaughter. Throughout the day I gave her water using a dropper. I left when she fell asleep. Ativan is good like that.

 

Life After My Demented Mom or A New Year: Time To Think On Death

Clock Work / martinak15
Clock Work / martinak15

It’s another year.

And I am trying to be optimistic about 2013 — optimism is not my strong suit — mostly because, at this point (knock on wood…… the gods can be very cruel), the worst thing that could happen is that she finally passes away………………….

She must be close. She can’t walk. She can’t talk. She yells. When she’s not yelling, she sleeps.

I’ve been thinking more about death and dying. What will it be like when she sips her last breath? Will I feel her soul leave her body? Will she die in her sleep? If she dies in her sleep, will something wake me up? Will I feel her departure? Or, will her organs slowly shut down? When will I finally hear the words, “she’s actively dying?”

My lovely yoga teacher Lea suggested I read The Tibetan Book of the Dead. It’s not what you think. This isn’t some exercise in the macabre. I just want to be ready. To use Lea’s words, I want to “hold the space” when that time comes. I want to be with my mom when she’s “actively dying.” I want to hold the space. I want to help guide her on her journey to wherever she goes.

(She is a saint and, no doubt, will live in paradise)

I want to make her passing as peaceful as possible.

For her.

For me.

And then  my life will start over again.

Who am I without My Demented Mom?

There’s a lot to contemplate in 2013.

>>Flickr pic by martinak15

The Good News: You’re Going to Die. The Bad News: Death Has Bad Breath & If You Have Dementia It’s Worse

Me & mom. Another day.

If you’re reading this blog because you have a parent dying from Frontotemporal dementia, I have bad news: things are going to get worse. That is a fact. No point in sugar coating the truth, right? There is no happy ending, no light at the end of the tunnel (unless you accept death as light), no hope, and no cure. Nothing………………………… says the glass-half-empty-girl.

There is only suffering.

What your providers will tell you as you progress further down the demented rabbit hole, is that “this” is harder on the families…………….. maybe they’re right. I’m not a doctor. I’m a daughter. Still, no one knows what my mother feels, what she may or may not be experiencing or sensing……………………. and no one tells you the truth: it’s going to get worse.

Worse for me was the yelling (well, worse this quarter because it has been much, much, much worse in previous months and years. See: Geriatric psych ward). My mom can’t talk. She yells………………….. AAAAHHHHHHHHHHHHHHHHHHHHHH!!!!!……….. always yelling. She still yells, not as much thanks to Hospice. We didn’t know if the yelling was due to pain, the disease, or some form of communication…………………………. an FTD expert from the Banner Alzheimer’s Institute would tell me that yelling is very common at the end stage……………………… Still, it’s an awful thing to witness. How do you comfort a 75 year old woman? What do you do? You can’t pick her up and cradle her………….. yes, you can hug her and hold her and lose your hearing at the same time, but what can you really, truly do. She is slowly dying. This is how she’s going out. I felt incredibly helpless. Totally alone. On October 31, I snapped. I did not want to carry this burden any longer. I wanted off the Titanic. I was ready to dive head first into freezing waters. As I sat in bed, I thought, ‘a plane crash would be a good way to go. Quick. I would just shut my eyes and go. That sounds nice.’

The thought of ending my own life on a 747 over the Pacific faded real fast with a good night’s sleep, which, for me, is sometimes all it takes. Of course, just because I got a grip doesn’t mean I don’t want off the doomed Titanic. I do. Very much so. But in order for me to actually get on a lifeboat, my mom has to die. And that is an interesting thought to contemplate……………………………. I often think about death. A lot. How could I not? I can smell Death’s breath……………………………….

So back to the plane crash…………………… I from time to time, try to put myself on that plane. To breathe in the fear, to imagine what would happen to me on impact………………… would everything just go black like the season finale of the Sopranos? Or is there something else waiting for me……………………. for you? Is there really a light?

I don’t have children, so I can take the time to do this, while reading the New Yorker.

Death is not a great conversation starter. People don’t like to talk about it. It scares them. Everyone turns incredibly awkward and you’re the asshole who started the conversation. Really, the thing is, most of us are wired to live — to survive. We don’t want to die because we have something to live for. Like children or grandchildren, a fabulous career or a cute cat (or two).

The Dalai Lama talks about death and contemplating death in his book, Becoming Enlightened, so I feel like I’m in good company when I think about a commercial jet nose-diving into shark-infested waters.

To make us mindful of death, the Buddha taught meditation on death. If you are mindful of death, you will be drawn into thinking of many things, particularly whether there is life after death. Even if you suspect that there is, you will take interest in the quality of that life — what it might be like.

This will lead you to think about Karma, the cause and effect of action, thereby drawing you away from choosing activities of harmful nature and encouraging you to engage in activities that are beneficial. This itself will lend your life a positive purpose.

If you try to avoid even the mention of death, then on the day when death comes, you may be frightened. However, if you contemplate the fact that death happens naturally to all living beings, this can make a big difference. When you become familiar with death, you can make preparations for dying, and decide what you should do with your mind at that time. On that day your preparation will have its effect; you will think “Ah, death has come,” and you will act as you had planned, free from fright.

I think he is right. However, while we can mentally and emotionally prepare for death and act of dying (which can take a long time), we physically cannot help ourselves along the way (unless we live in Oregon)………………………………… we cannot die with dignity………….not even one ounce……………………. dying is a family affair, and if an individual is dying from a terminal disease, they should have the right to end their life. But, then, that’s another story. Dying is like arm wrestling with the devil. You fight hard to win, but you know you’re going to lose. Witnessing death ravage your mom evokes a pretty similar response: you want to make your mom as comfortable as possible, to ease her pain — emotionally, physically and mentally — so she can be at peace………………………… my saintly mother deserves that much……………………. And every single day, I feel like I’m dancing with the devil and on the next turn, he’s going to break my neck. I do my best, but I can’t do everything. So what do you do? Nothing. You watch. You suffer with them. You cry with them. You watch them yell out…………………………….. you hold their hand, you hug them, and you give them palliative care.

And then you go home and board that imaginary plane to nowhere.

A Letter to Those Businesses And Professionals Who Make Dementia Even More Agonizing

Dear hospice and nursing home (names of providers removed because I have enough problems, frankly),

Thank you for making late/end stage dementia even more awful by not coordinating your care of my mom, by failing to communicate with me, by making me feel like I’m making poor decisions on her behalf, by one day telling me, no, she can’t feel hunger (hospice) and the next day, telling me, well, she could feel hungry (home)Thank you hospice and nursing home for your conflicting care and for not informing your staff of little changes. Thank you nursing home for ignoring me month after month when I begged you to lower the dosage of her psych medications……………………. it was good to see that you finally took action after she fell flat on her face because she was so zonked out. Thank you for the confusion, thank you for making me feel like the bad guy. Thank you for making me re-tell the story of how we’ve been treated over the last several years by psychiatrists who would dope up my mom to keep her from screaming (yes, this is how we treat our demented elderly, folks). Thank you for reminding me that I am alone in this. Thank you for making it clear that this — dementia and long term care — is a business and a lucrative one at that (especially if you go the private pay-only route).

Thank you knocking me down yesterday……………….. because now I’m back up on my feet. Slightly bloodied (nice kick to the heart, by the way), and ready to get the shit kicked out of me yet again, because I am right and you are wrong.

I know my mother.

One more thing: Thank you for reminding me that part of my duty is to one day help government work toward and eventually craft death with dignity legislation………………… we are so quick to fight for life, but we lack the courage to face death and say ENOUGH.

To slowly die sitting in your own feces, unable to eat, speak, walk or do anything that makes us human, does not guarantee you a place in heaven. It simply serves as a reminder that we are still living in dark ages.

I expect to be burned at the stake for that.

Sincerely,

The daughter who asks too many questions, the daughter who fights and pushes so she can get her mom the right care, the daughter who has endured the stares and the whispers, the daughter who diagnosed her own mom when the doctors failed to, the daughter who has lost a lot ( A LOT) of sleep over the past 8 years, the daughter who visits her mom almost daily, the daughter who holds her mom’s hand, the daughter who makes the really hard decisions no one ever wants to make, the daughter who is more often than not dismissed by medical professionals, the daughter who has to fight so her mother can have just a drop of dignity.

Falling Down Sick or The End. Maybe. Finally? Maybe.

My mom fell. Hard. On her face. She was trying to get out of bed. She seemed OK. Shaken, but OK. I walked in the door as they were calling me to tell me about the fall. I stayed for dinner. She had a slight fever…………. could be from the fall; could be something else. She had seriously declined over the last month or so………… I fed her soup, gave her sips of water…………… I was worried she was dehydrated. I kept giving her water. I gave her too much. She threw-up. The med-tech said it could be the fall………….. a head injury. We should go to the ER. I hate the ER. Staff are just not equipped to deal with severely demented patients……………..  and it’s incredibly traumatic for the demented individual………………… Still, I knew the nurse was right. We needed to go. So we went. It was around 5:30 p.m.

I decided on the way that if there was serious brain trauma, I was going to let nature take its course. I would call hospice and make her comfortable. I wanted no extraordinary measures taken………………….. my mother has a lousy quality of life. She can no longer speak. She lost her two words: “Despierta America” and “la fruta.” Instead she yells out. She can’t walk. When she’s not sleeping, she just stares at nothing. Her food is pureed like baby food. She can’t bathe herself. She wears diapers. She needs a caretaker to physically change her position so she doesn’t get a sore.

Something is very wrong with our definition of “life.”

A cat-scan revealed nothing……………….. good news. An x-ray of her lungs revealed pneumonia. Pneumonia is a killer. And it’s a blessing in disguise (depending on your definition of life). I had a choice. I could admit her and begin a course of intravenous antibiotics…………….. or not. They would send her home with a script. It was 11 p.m. I was tired. So we left with a script. I regretted it. I wanted to tell them to stop. I didn’t know what to do…………………… I don’t sign death warrants for a living. It was just me and I had to make a choice……………… I don’t know………………. I should have said no. I wish I had declined the script.

I prolonged her suffering.

What did I do?

Around 2 p.m. the next day, I drove to her church and waited to talk to her priest. I wanted to discuss last-rites……….. and I wanted to talk about the antibiotics. I hashed it out with friends, with my boyfriend……………. the thing is, no one can tell you what to do in this kind of situation……………. they can’t. It’s literally a life or death conversation and only you can make the final call. Sure, they’ll listen; they’ll tell you that you’re doing the right thing………………… they’ll say, I can’t even imagine. I hate that.

I can’t even imagine. Now that’s just a shitty thing to say. But I know what you mean, so it’s OK.

I decided to finish the antibiotics, wait and see. If there was a reoccurrence, I would let nature take its course.

A few weeks have passed and while she’s kicked the pneumonia, she’s not exactly eating. We’re talking about a woman who was ravenous………… she was the person who ate her meal plus her neighbor’s meal…………….. Now she only eats a few bites and drinks a few sips……………….. Hospice was called to assess.

The nurse looked at her, looked at me and said she qualifies.

He gave me a hug and left.

Is she dying?

My mother is not “actively” dying. She’s dying………………. but not actively…………. nor is she “pre-dying.” Dying is a process………… like birthing a baby………………. and it happens in stages. They should really provide you with a scale like they do with your cervix………………. I’m guessing here, but I’d say we’re about 2-3cm dilated.

Welcome to Purgatory.

I am ready to let my mom go. I don’t know how much longer I can keep going………………………. I’m tired. She’s tired. Maybe she and I are feeling the very same thing………. we just want this to be over with. I think she knows. Sometimes, she’ll look at me and her eyes will be crystal clear…………… like she knows she’s trapped in a broken-down body…………….. her mind, mostly mush, except for that one part that says, Hey, what the fuck is wrong, why can’t you understand me….. save me…. help me…… please help me.

THAT THOUGHT wakes me up in the middle of the night. Like wake-up sweaty, stressed-out and with a headache to boot.

Thank you Costco for bulk Advil.

So where are we? I don’t know. Limbo, I guess. I am trying to make arrangements. I picked out an urn. I’m 35 and I picked out an urn………………… and then I thought about what should I wear to the funeral. I know. But it crossed my mind. She’s not even dead yet and that popped into my head. You can laugh if you want. Or you can judge me. I don’t really care.  I am too tired to care.

Dying or End Stage…………… it’s like opening up a can of maggots.

It’s that shitty.

But it will get better.

>>Flickr photo by archangel_raphael

Death, Compassion and Humor. Not In That Order

Hi Kathy, we’ve got the two letters from your mom’s doctors, so you can come in and sign the DNR.

Oh, great. OK. What time? Noon? OK, I look forward to it. I mean, I’m not looking forward to it. Um, you know what I mean.

And that is how I made the appointment to sign my mother’s death warrant. Over the past eight years, I have had to make many incredibly difficult decisions on behalf of my mother……………………. some are more difficult than others, some can leave you curled up in a ball in the middle of an ER. Signing the DNR (Do Not Resuscitate) was an easy decision to make, by easy I mean, I would remain upright as opposed to curled up in a ball crying……………………….. of course, my mom already had a legal document stating that she did not want extreme measures to be taken to prolong her life………………… what she did not have was an actual DNR, an orange piece of paper that the paramedics look for before going above and beyond to save a life. It took me a couple of months to actually get this taken care of…………….. yes, I knew what to do, I knew what needed to be done, but getting it taken care of………..well…………….asking her doctor to write a letter stating that she has a terminal disease with no chance of ever recovering can kind of fuck you up………………. psychologically speaking, of course.

So, I made an appointment for myself instead.

Great to see you…. you look good. What’s can I help you with?

Well, you know I still have that weird pain on my right side; I’m still constipated, but that’s probably stress; and I need you to write and sign a letter stating that mom’s dementia is terminal and stuff. It’s for the DNR.

Sitting in his office, making my request……………. it just struck me as funny………….I don’t know, the whole experience was sort of Seinfeldesque in nature.

Finding the humor in my suffering, our suffering, is, I suppose, a survival skill……………. it’s what helps me cope with my walking grief………….I actively try to seek out the funny. I have to; it’s what keeps me sane, because to experience this kind of sorrow day-in and day-out, with no relief in site, no source of comfort, no regular family support, no hope that she’ll one day be cured, well, that dark, depressing vortex can appear inviting after awhile…………………… because face it, getting out of bed to watch death dance around my mother as she languishes in this life is neither healthy, nor is it how I like to start out my mornings………………..

But I do.

You do.

It’s what we do because it is the right thing to do.

Even though we’re all on the verge of folding our hands.

******************************

Hi Kathy, good to see you, come on in…………………. I walked into her office and sat down, ready to sign the DNR. It didn’t feel like a big deal, after all, I’ve signed plenty of documents absolving the medical community of all responsibility should they accidentally kill my mom……………………….. it was just another piece of paper. Until she started reading the paper and telling me what would happen if (and when) something happens to my mom. There will be no cardiac compression, no endotracheal intubation, no artificial ventilation, no life support drugs or emergency medical procedures……………… the words sit in your gut for a while.

She handed me a tissue.

I signed the document.

She signed the document.

The witness signed the document. She touched my shoulder and left the room.

*****************************

I am convinced that we confuse compassion for pity……………… compassion is something else; compassion takes time…………. pity, however, is much easier to dole out. Compassion is a rare quality which few possess and I now understand why. People don’t want to talk about this disease; they don’t want to witness it; they don’t want to walk in your shoes; and they don’t want to take the time…………… this is compassion as I know it: A former colleague sent me an e-mail after learning that my mom was being housed at the psychiatric unit last February. Although he had never met my mother, nor did we keep in contact after I left my job, he offered to sit with my mother. He said, “I have an extra set of hands and if it is in my power, I would like to help.”

That is compassion.

………………..

Mother’s Day & Dementia… My Own Op-Ed (please share, please spread the word)

Another Mother’s Day rolls on by….

Mother’s Day is an awkward holiday. I say awkward because while I understand why we make such a fuss about this day, I can’t help but find it to be somewhat, well, insensitive — to put it bluntly, Mother’s Day is another reminder of what I, and others like me, don’t have. My mother is alive, however, she is far from well. My mother is slowly dying from Frontotemporal dementia. FTD, or Pick’s disease as it’s sometimes called, affects the frontal and temporal lobes of the brain, or the area of the brain that makes us who we are. Call it your personality center. Like Alzheimer’s disease, FTD can cause memory loss, but it can also cause dramatic personality changes, including apathy; many lose their ability to communicate, and because the disease gnaws away at the gray matter that controls behavior, many with FTD act out; they may yell, become socially inappropriate, impulsive, aggressive and completely incapable of understanding that their actions have consequences. Adding to an already challenging and misunderstood situation, some individuals, like my mother earlier on, don’t even realize that something is terribly wrong.

The result for many of us with a “behavioral” parent is that we live with the stress, the stares, the comments, or worse, we live in fear of being asked to leave yet another assisted living facility.

Dementia is not a quiet disease.

Alzheimer’s disease is the number one type of dementia, accounting for about 50-to-80 percent of dementia cases. Unfortunately, more needs to be done in terms of educating the general public about this and other, lesser-known dementias like FTD. Alzheimer’s disease is the sixth leading cause of death in the U.S., and unlike diseases that were once considered a death sentence, i.e.: heart disease, breast cancer, prostate cancer, HIV/AIDS, and stroke, dementia can’t be cured, prevented or even slowed. This is not a manageable disease, and much more needs to be done in terms of funding and research. Today, more than five million Americans have Alzheimer’s disease and that number is expected to hit 16 million by 2050. To put that into perspective, according to the 2011 U.S. Census 3,880,244 people live in Maricopa County alone, and 6,482,505 live in the state of Arizona.

This disease is also expensive, and family members are often the ones who do the heavy lifting — emotionally, physically and financially. Just last year, some 15 million family and friends provided over 17 billion hours of unpaid caregiving. If you put a price tag on their time, it would amount to around $210.5 billion.

This is the calm before the Tsunami.

I always say, we have no survivors. My mother can’t tell you her story. She can’t even tell you if she is in pain. It’s difficult to talk about who my mother was because she’s not dead — to talk about her in the past tense, to say “she was” sounds so cruel; and yet, sometimes the only way to describe the woman who raised me is in the past tense. My mother was a sweet, gentle soul who devoted herself to her family, to her friends, even to complete strangers. Everyone who knew my mother loved her. She was the heart of our little family. Though the disease has robbed her of so much, her core — that gentle soul — remains intact. Today, when someone approaches her, she just wants to hold their hand or give them a kiss.

Like a child, she seeks love and affection.

As each year rolls into the next — I started noticing something was wrong in 2004… I was 27 — my memories of who she was before FTD fade. I suppose that’s time doing what it does best. And then Mother’s Day comes around. For me, it’s a tragic, in-your-face reminder of what I long for most. Seeing daughters having brunch with their mothers, laughing and talking… I tend to turn away. It’s just easier that way.

My mother doesn’t know my name, she doesn’t even know who she is. Thankfully, she does recognize me. Every time she sees me, she smiles and showers me with kisses. She tucks my hair behind my ear. She takes my hand and, in her own way, tells me about her day as we walk. Even though my mother’s language ability has been reduced to no more than a few words, I understand her. She is my mother, after all.

Yes, I would love to enjoy the kind of relationship that develops between adult daughters and their mothers — that special friendship which occurs later in life. But that’s not my reality. It never will be. This is my reality and I’ll take what I can get because we’re on borrowed time. One day, she won’t recognize me. She’ll just stare.

Hopefully, though, she’ll still take my hand and walk with me.

To learn more about Alzheimer’s disease and other related dementias or to make a donation visit http://www.alz.or/dsw.

Howard’s Brain or A Day In the Life of a Man Living With Frontotemporal Dementia

I’ve never met Howard. I was “introduced” to Howard via a Facebook support group for kids whose parents have Frontotemporal dementia (Pick’s disease) or other early-onset dementias…. Howard has an interesting story to tell……. he actually knows he’s dying from Frontotemporal dementia. Howard’s mission is to tell his story and now he and others are working on a film to show what it’s like to live with this type of dementia. You can check out a clip below and, if you feel like it, donate some cash so he and his movie-making peeps can finally say CUT:

The skinny on Howard, his brain and the film:

Who’s Howard?

Howard Glick is a 53-year-old man currently living alone in New York City. Howard’s funny, outgoing, talkative and has had an interesting life.

If you saw him on the street, you might not notice him. But there is one thing that makes him different from most of us: Howard has a rare brain disease called Frontotemporal Degeneration, or FTD. Continue reading “Howard’s Brain or A Day In the Life of a Man Living With Frontotemporal Dementia”

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

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

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

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.

 

2-3 Years to Live?

my demented mom

When dad said mom has maybe 2-3 years to live, I didn’t feel much. I knew how I was supposed to react—at least when I’m around people other than my dad—with a degree of horror and sadness. People, I suppose have an emotional expectation of you—they expect you (or need you) to exhibit a particular range of feeling, regardless if you actually feel it……….. and if you don’t, you must be some beastly human.

I’ve just learned that sometimes you have to give people what they want………………….. I know what is “appropriate,” and sometimes in this vile game of life, you have to put out, so others will feel better.

Dementia is not for the faint of heart.

Confession time…………….. so hearing that my mom possibly-maybe-no-one-really-knows-for-sure has 2-3 years I’ll tell you what I really felt……………………………….RELIEF. Relief because in my mind, I had been thinking 5-10 years and I could deal with that. I accepted that time frame; digested, accepted, knew that I was in it for the long haul. Knew that a part of my life would be defined by my mother. I knew this. I was cool with this (or as cool as one can be)…………………………………………….

Learning that we’re maybe looking at 2-3 years, well, I felt hopeful. My mom lives a very sheltered life. The toll of her disease seems to be slowly destroying my dad. My mom is not the woman she once was. She is a child. Her vocabulary has been reduced to two words (give or take), “la fruta” and “Despierta America.” Her favorite Spanish TV show……. well, her favorite Spanish morning show…. “Despierta America” is new thing, but still………… try talking to a person who speaks only in “Despierta America” with “la fruta” woven in for good measure.

The disease has taken away my mom. It has made mush of her brain. She can’t function without adult supervision. She can’t leave the house unless she is accompanied by myself or my dad. She can’t drive. She can’t cook. She can’t read. She can’t write. She can’t work. She lives in a void. She does not remember you. She does not know that she has a sister or a gaggle of nieces, nephews, great-nieces-and-nephews and now a great-great nephew.

We have been told that we shouldn’t take her out too much because new places (new to her) can cause her to become anxious and ultimately became even more unruly. The excitement of Fry’s supermarket is just too much for her. Unfortunately, this includes her highlight of the week: Church. Mom becomes incredibly anxious to see the priest……….. She yells, she runs into the aisle, she disrupts Communion………….. I have felt her heart rate skyrocket as a result of just trying to get his attention in the middle of mass. I think mine does the same……….. holding back a flailing demented woman is just not easy—especially when she’s stronger than you are.

Another 5-10 years of this versus another 2-3 years………………….

Soak that in for a moment.

 

>>Flickr pic by Stuck in Customs

 

 

My cousin described my mom to me as, “funny and generous.” I don’t remember that person, but I believe her. People love  (or loved) my mom.