Going to the Funeral is the Easy Part

The Funeral of Atala
The other day, my friend Gary posted an NPR “All Things Considered” interview with a woman named Deirdre Sullivan to his Facebook wall. The gist of the interview was the importance of going to the funeral — a lesson that was imparted to Sullivan by her father.

Sullivan says this: I believe in always going to the funeral. My father taught me that. The first time he said it directly to me, I was 16 and trying to get out of going to calling hours for Miss Emerson, my old fifth grade math teacher. I did not want to go. My father was unequivocal. “Dee,” he said, “you’re going. Always go to the funeral. Do it for the family.”

The interview got me thinking. And then it began to irritate me. My mother has mostly been forgotten about. I rarely hear from her family or friends — family and friends she did so much for before the dementia consumed her gray matter — even on her birthday. Yes, I receive the occasional Facebook message or email, but mostly, I hear from no one.

I suppose life goes on. We reside in our own purgatory.

It’s been like that for a very long time.

Which brings me back to the whole funeral thing.

Sullivan says this about her own father’s funeral, The most human, powerful and humbling thing I’ve ever seen was a church at 3:00 on a Wednesday full of inconvenienced people who believe in going to the funeral.

When my mother finally takes her last breath, she will likely be surrounded by myself, her husband and my boyfriend (a man who has done more for her than her own siblings). As for the funeral, I don’t know who will reach out and ask about attending. As for those who completely abandoned her in life — I am thinking of a select few — well, they likely won’t hear about it from me.

If you weren’t there for her in life; why bother in death? Let’s face it: Going to the funeral is the easy part; hardly an inconvenience, especially if you never had to witness the wretched reality. The truth is, if she mattered at all, there would have been visits, inquiries, phone calls, offers of support — especially during those incredibly dark, dark days when she was locked away or when they wanted to electrocute her brain.

Where were you when she was held in a lockdown psychiatric unit? Do you have any idea what it’s like for a daughter to find her own mother covered in her own feces? Do you have any idea what it’s like to watch your mother pound on the glass, screaming to go outside? You moved on. You forgot about her. 

And now you want to go to her funeral?

The most human, powerful and humbling thing would be to show up. Not in death. But in life. No matter how grotesque the circumstances.

Benjamin Button Effect: What Do You Do When Your Mom Cries Out Like a Baby?

3728905329_4b47a1b5cc_bIt was around 8pm last night when I started watching some of the videos I had taken of my mom. In the more recent ones, she is yelling — a lot. That’s all she can do. She can’t talk. I take these videos because, I feel like people don’t believe me when I say, ‘I think she’s in pain.’ And because past is prologue — I once had to show my video of her crying to the nurse at her home and the hospice team in order for them to give her morphine and up her Haldol — I take videos so I am always armed with evidence.

And they wonder why caregivers lose their minds…………………………

As I watched these videos of her yelling, her face twisted and anguished, I told my boyfriend who was watching these 30 second snippets with me, that someone in my support group said that mom probably has the mental awareness (she used a different term, I think) of a baby.

Haven’t you ever seen a baby cry? 

No. I mean yes, but not really. And if I happen to be around someone with a baby (which is rare), I give them back as soon as they take that long inhale right before the wailing commences…… and then I walk away. The fact of the matter is, I never grew up with or around babies.

I’m certain, as a kid, all of my imaginary friends were successful professionals in their 30s.

So last night, as I watched mom yell…. I pulled up YouTube and typed, “crying babies.” I probably watched four or five videos of little sweet faces, completely twisting and turning beat red, as they cried…….. puffy lips quivering, eyes squinting, tears rolling down their tiny faces. Believe it or not, I could actually see a little bit of my mother in those faces. Her mouth turns upside down into a frown, her eyes squint and she’ll start yelling………………………. Sometimes a hug will calm her down; sometimes you have to let her yell it out. My mother can’t tell me what’s wrong, so you do what you would do with a baby — you do a mental checklist:

Is she wet?

Is she hungry?

Is she thirsty?

Is she comfortable?

Is the music too loud?

Is she cold?

I always joke that if I have a baby — barring any health issues — it’s going to be a walk in the park. A total breeze. After all, you can pick them up to comfort them, You can take them with you in one of those neat backpack thingies, you can arrange them yourself so you know they’re comfortable, their poop is much more manageable (even cute?), diapers are much easier to get on and off, bathing is a no-brainer and, and up until a certain age, you’re stronger than they are, and best of all, they eventually learn to tell you what they need, and maybe, they’ll even make you laugh……………….. and that’s what makes it all worth it.

Or at least that’s what I think. I have three cats and a dog.

There are very few joys attached to reverse parenting. You have to work very hard to find the funny. You also have to mentally force yourself to view your circumstances differently (or die trying, because this disease will kill you, too): This is a choice, this is a priviledge to help my loved on on this horrible journey, I get to do this, I get to play this role in my parent’s life. This will pass. 

It’s also a very lonely experience. Unlike parenting a newborn, very few people come out to celebrate your achievements — hey, I heard your mom didn’t spit in church today! That’s AWESOME! Here are some flowers — in fact, I feel like as each day turns into the next, seasons change, birthdays come and go, babies are born, babies learn how to walk and talk, you’re mostly forgotten about. People move on. That’s life. That’s the point of life.

We’re not meant to live in some damned and demented limbo-land.

And you people want to live to be 150 years old.

The mere thought of living to be 150 years old makes me want to cry.

>>Flickr pic by Chalky Lives

My Morning With Mom… A Composite

Andres Rueda

My mom isn’t yelling much. This is a new development. It wasn’t long ago that she would howl when I would walk into her room. “Shhhhh. It’s OK. Shhhhh. I’m here. Shhhhh.”  She’d turn her head, look at me with this terribly anguished, almost twisted face, and yell. “Shhhhhhh. I love you. Shhhhhhhh.” I would hug her. She would yell I would hold her hand. She would yell. “Shhhhhhhh. Los pollitos dicen, pio, pio, pio, cuando tienen hambre cuando tienen frio.”

Shit, why can’t I remember the rest of the song?!

“Shhhhhhhhh. Please, no grites. No grites. I’m here. I love you. No grites, por favor.”

“Los pollitos” was a song my mom used to sing to me as a little girl. I try to sing it to her, but, somedays, it just made the yelling worse.

Did she know the song? Was she telling me, “I REMEMBER!!! I AM YOUR MOTHER!!!”

Or, was my singing voice truly that offensive to her sensitive ears?

Eventually, her yelling would subside, and I would sit on the arm of her big, beige pleather sofa and massage the top of her head.

We are living in the Dark Ages when it comes to dementia and dementia care.

This disease is unpredictable and change can happen overnight. Now, when I walk into her room, she’s mostly quiet. Even as I move the sliding glass door along its warped track and the thing grinds, she doesn’t yell. She sometimes doesn’t even look up.

There’s nothing.

She doesn’t know who I am.

My morning with mom. A composite:

I walk over to the small black clock radio, turn on the classical music station, and hide the radio in a cupboard, so the other residents don’t pocket it when they wander in and out of the room. I walk back to my mom and sit on the arm of her chair.

I gently rub her head.

Though her room is quiet, but it doesn’t stay that way. Margie, her roommate starts talking about the kids in the yard (the residents who are walking back and forth); Jim knocks on the glass door and waves. “Hi, Jon,” I say with a smile (I wish I could be as happy as Jon; Jon’s wife once told me that he’s always been so sweet and the disease has made him even more so). Alice slowly creeps into the room. She’s carrying a man’s white sneaker in her hand. “Hi, Alice.” Alice slowly stands no more than a few inches from my face. I think she has something to say, or she wants something, but her words, lost and twisted in her tangled mind, are lost. She walks out of the room, and slowly paces back and forth. She’s young. She can’t be more than 50 years old. She wears diapers and they sag.

James shuffles along outside mom’s room. He’s fast. And very tall. The cold morning air doesn’t seem to bother him. Finally, he stops in front of our room and walks in. I’m happy about this visit.

I love James. He is one of my favorite residents. On good days, he’ll tell me that I’m beautiful. He makes my day every time I see him, especially when he flashes that chipped, toothy grin of his. He makes me smile. 

“Hi, James.”


James sings his words. He sits next to Margie and they start talking………………….. their conversation makes no sense, yet they laugh and carry on.

They speak their own language.

Mom sits and stares out at the sliding glass window. I make the sign of the cross on her forehead. I tell her I have to go to work and I kiss her goodbye.

>>Flickr photo by Andres Rueda

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.

The New York Times and Frontotemporal Dementia … A Must Read

An article, which appeared in The New York Times, about a wife and her husband who has Frontotemporal dementia really hit home with me……. I wish this article came out five or six years ago…… For me, reading this, well, I felt some comfort………… like when they talked about shoplifting …………… knowing that it wasn’t my mom trying to steal the Almond Joy or the Starbucks (that I had already paid for), it was the dementia eating away at her gray matter.

I suppose there’s something to be said about not being totally alone in this ordeal, even if the people who can relate to my story live in Manhattan………. they’re still there.

When Illness Makes a Spouse a Stranger

He threw away tax documents, got a ticket for trying to pass an ambulance and bought stock in companies that were obviously in trouble. Once a good cook, he burned every pot in the house. He became withdrawn and silent, and no longer spoke to his wife over dinner. That same failure to communicate got him fired from his job at a consulting firm.

By 2006, Michael French — a smart, good-natured, hardworking man — had become someone his wife, Ruth, felt she hardly knew. Infuriated, she considered divorce.

But in 2007, she found out what was wrong.

“I cried,” Mrs. French said. “I can’t tell you how much I cried, and how much I apologized to him for every perceived wrong or misunderstanding.”

Mr. French, now 71, has frontotemporal dementia — a little-known, poorly understood and frequently misdiagnosed group of brain diseases that eat away at personality and language. Although it was first recognized more than 100 years ago, there is still no cure or treatment, and patients survive an average of only eight years after the diagnosis.

But recently, researchers have been making important discoveries about the biochemical and genetic defects that cause some forms of the disease. And for the first time, they have identified drugs that may be able to treat one of those defects, the buildup of abnormal proteins in the brain. Tests in people, the first ever such drug trials in this disease, could begin as soon as early next year at the University of California, San Francisco.

“There’s really been an explosion related to the biology,” said Dr. Bruce L. Miller, a professor of neurology andpsychiatry there. “I think at least some subtypes of frontotemporal dementia will be the first neurodegenerative diseases we find a cure for.”

This disease is different from Alzheimer’s, the most common form of dementia. But it is perhaps even more devastating, because it strikes younger people, progresses faster and, unlike Alzheimer’s, does not attack memoryat first but begins with silence, apathy or bizarre personality changes. It is thought to afflict at least 50,000 to 60,000 people in the United States.

The scientific findings in frontotemporal dementia may also reshape thinking about the fundamental flaws involved in Alzheimer’s disease.

“I think the way dementia is going in general now is to realize there are many different subtypes,” Dr. Miller said, adding that what is now labeled Alzheimer’s disease may actually turn out to include hundreds of different illnesses.

Dementia is a formidable adversary, and the history of efforts to treat Alzheimer’s has to temper any excitement about potential medicines for frontotemporal disease. The drugs for Alzheimer’s have been a disappointment, with just temporary effects on symptoms at best.

But even if treatments or cures for frontotemporal dementia do emerge, they will almost certainly come too late for people with advanced cases, like Mr. French or Richard Rainwater, a billionaire investor who learned in 2009 that he had progressive supranuclear palsy, which some consider a form of frontotemporal dementia. Mr. Rainwater and his family have donated more than $20 million to a research consortium, but given that he has a rapidly progressive form, any advances from the consortium may be more likely to help others than to save him.

Looking for Answers

Looking back, Mrs. French, who is 66 and lives in Manhattan, recalled episodes of odd behavior over the years and realized that her husband’s mind had probably begun to slip while he was in his 50s, at least a decade before the disease was diagnosed. He had always changed jobs a lot. At the time she took it as a sign of a stubborn personality, not of illness — and it is still not clear which it was. He always wanted to do things his own way, and that did not sit well with some bosses.

“I thought it was just Michael being Michael,” she said.

A friend described Mr. French as being unable to read the tea leaves, oblivious of corporate politics. At one point Mrs. French even bought him a self-help book. But he never changed.

And he always found another job, better than the one before. But things went downhill in 2006.

“His immediate boss was so frustrated by him that she called up, and we were at the dinner table, and I could hear her screaming,” Mrs. French said.

He was fired, and this time he did not find another job. At 66, he retired.

Soon after, because he had trouble speaking, he consulted a neurologist. When they got the diagnosis, Mrs. French asked the doctor, “How do we treat it?”

“It’s brain atrophy,” he replied.

Her thoughts of divorce evaporated. Instead, she told her husband: “Whatever happens, we will go through this together. I will be there.”

From then on, the silence at the dinner table no longer troubled her. It did not seem personal anymore. He was not refusing to talk; he simply could not. Her anger melted into sadness.

But sometimes she still blew her top. Once, she came home and found him at the stove, seemingly unaware that his oven mitt was smoldering.

“I actually hit him a couple times out of frustration,” she said. What made her lose control, she said, was a toxic mix of frustration and fear — fear of what was happening to him, and fear that she would not know what to do, how to help. No amount of information from his doctors could put her at ease.

“They can tell you everything that’s ever happened to anyone, but they can’t tell you what’s going to happen to you,” she said.

The last five years have been wrenching and often lonely. Michael was the love of her life. When she married him, her sister asked, “How does it feel to hit the jackpot?” In more than 30 years of marriage, she never heard him say an unkind word about anyone. He was an engineer, lectured at conventions, did volunteer work, belonged to a history book club, ran marathons. Now he can no longer speak, read, write or walk.

If there is comfort anywhere for Mrs. French, it is in knowing one thing: she has kept her promise to be there.

The Science

Frontotemporal dementia, also called frontotemporal degeneration or Pick’s disease, refers to a group of diseases that destroy nerve centers in the frontal and temporal lobes — the home of decision-making, emotion, judgment, behavior and language. Some forms of the disease also cause movement disorders.

Most cases occur sporadically, in people with no family history of the illness — like Michael French — but a small percentage are inherited.

Patients generally receive from one to four misdiagnoses, and it may take years to finally get the right answer. Mistaken diagnoses can include Alzheimer’s disease, stroke, midlife crisis or psychiatric illnesses like depression,bipolar disorder, post-traumatic stress or anxiety. Many relatives of patients say doctors dismiss their reports of personality change. But it is real.

“They totally break down in their ability to connect with other people and care about them,” Dr. Miller said.

There are eight subtypes of frontotemporal degeneration, sorted by the symptoms they cause. Some affect behavior. Others, grouped under the heading primary progressive aphasia, affect language. Still others affect movement, leading to disorders that resemble Parkinson’s or Lou Gehrig’s disease (also called amyotrophic lateral sclerosis or A.L.S.).

But patients may match more than one category, and the subtype may change as the disease progresses.

“I see a lot who don’t present like the textbook,” said Dr. Edward Huey, an assistant professor of psychiatry and neurology at Columbia University Medical Center.

In most patients, MRI and other scans reveal shrinkage in the frontal and temporal lobes, sometimes to a shocking degree.

“If I showed you more extreme cases, you could read it from across the room,” Dr. Huey said.

He said researchers were using imaging to find out if specific symptoms could be mapped to atrophy in certain spots.

“The frontal lobes are sort of the last frontier in the brain,” Dr. Huey said, adding that the losses these patients suffer are helping researchers understand more about what the frontal lobes do. As the brain atrophy progresses, Dr. Huey said, patients “have pieces of psychiatric syndromes, but not the whole syndrome.” For instance, they have compulsions, but not the usual accompaniment, obsessions. So they may wash their hands over and over again, but not in a worried or anxious way. Some lose their inhibitions and moral judgment. Shoplifting is not uncommon. Many have the apathy and social disconnection that usually go with depression, but they do not feel depressed.

“They’re not down, but they just don’t enjoy things as much as they used to,” Dr. Huey said. “There appears to be a dysfunction in the reward circuit, where activities that were rewarding and pleasurable no longer seem to be. These patients lose themselves.”

Many seem to go on endless eating binges and gain weight. It is not clear why — whether they are actually hungry or whether the eating is just another compulsion. Some people with the illness shower repeatedly or check the mail 100 times a day. One possible reason, Dr. Huey said, is that “the part of the brain that tells you, ‘No, that task is done,’ is gone.” Some patients collect things — by the hundreds. A few have had bursts of creativity in music or painting, possibly because other brain regions come to the fore as the frontal lobes wither.

A Way of Life Cut Short

Long before her husband became ill, Mrs. French had a successful career in sales and marketing for textile companies and ultimately became a vice president at Liberty of London. But she gave it up in 1991 to do something she loved: teaching English as a second language to adults. She was doing that work when his condition was diagnosed.

One day, in a moment of inspiration, she asked her students if they knew the traditional wedding vows in English. She began to recite them. At “for better, for worse,” she choked up. Struggling to keep her composure, she quickly finished and moved on to another subject.

After teaching, she would walk home through Central Park, and in the early days of his illness Mr. French would often meet her halfway. She would see him heading toward her, smiling and strikingly handsome. “When I look at Michael, that’s what I see, that’s who he will always be to me.”

In 2007, Mrs. French joined a support group for caregivers of people with frontotemporal dementia. Jill Goldman, a genetic counselor at Columbia University Medical Center, said she started the group because patients’ relatives felt that they did not fit in at Alzheimer’s groups; their loved ones were younger and often had bizarre behaviors that were nothing like Alzheimer’s.

“One of the things that goes first is insight,” Ms. Goldman said. “ ‘There’s nothing wrong with me. Why can’t I do what I want to do?’ ”

Members of the group tell of loved ones who hug strangers, who fly into terrifying rages and hit family members and health aides, or who pass their days in silence cutting up newspapers or watching television. Patients are easily taken in by financial scams that can cost families thousands of dollars. Often, apathy sets in, and people once devoted to their families lose interest in everyone, even their own children.

“My son and I look out the window and see my wife out there, stepping on leaves, and we start to cry,” one member said.

Some have struggled with uncertain diagnoses because patients have symptoms of both Alzheimer’s and frontotemporal disease. One wife described trips to multiple doctors and inconclusive reports on PET scans and spinal taps. Should she have taken her husband to the Mayo Clinic? She agonized over the idea that he might have some illness other than frontotemporal dementia or Alzheimer’s, something treatable, and that there might be some way to rescue him, to bring him back.

Another said her husband, a judge who had always been mild-mannered and modest, turned boastful and began talking to strangers in the street, making jokes at the wrong time and falling for scams.

“He salutes every flag, closes every gate, kisses every hand,” she said.

Riding the bus in Manhattan, he will loudly announce, “I haven’t killed anybody lately.” Not infrequently it gets him a seat. He can turn violent and has struck a health aide with his cane.

“He’s just mean and nasty,” his wife said. “He was such a wonderful man. He’s not a person anymore.”

Ms. Goldman provides stacks of business-size cards that spouses can hand out to strangers in awkward situations.

“My husband has a terminal brain disease called frontotemporal dementia,” the cards read. “Thank you for your understanding.”

Many find that friends and family pull away. Nearly all grapple with whether and when to take away car keys, give drugs to blunt aggression, hire a health aide or put the patient in a nursing home. One group member said, “The doctor told me, ‘You’re taking good care of him, he’ll live a long time,’ and I said, ‘Why is that a good thing?’ ”

Patients are hard to care for at home, and those who are young, strong and aggressive are sometimes kicked out of nursing homes because they are seen as posing a physical threat. But employers do not necessarily sympathize with relatives called out of work in the middle of the day because a patient has punched or shoved someone at the nursing home.

“My boss says, ‘You just have to deal with this better,’ ” one group member said.

Another group member, a professor of psychotherapy and mental health counseling, said she quit her job at the height of her career to take care of her partner and after a few years became suicidal.

“Being a caregiver in this disease is a grieving process,” she said, “while the person is still alive.”

Easing the Burden

Ruth and Michael French managed on their own until May 2009, when he fell down a flight of stairs in their apartment building while she was at work. He fractured his skull and came home in a wheelchair, so weak and frail that she hired an aide to help take care of him.

Mrs. French is fine-boned and thin, and as her husband grew weaker, the physical demands on her became daunting. Streets she had thought flat revealed themselves to be hills once she found herself trying to push a 140-pound man in a wheelchair. Potholes yawned like chasms. One night at home, after helping him clean his teeth, she turned to put the toothbrush away, and in that moment he fell into the bathtub. She was barely able to pull him up.

“I said, ‘Michael, now we’re at the point where we’re both at risk,’ ” she recalled.

She injured her wrist, developed a stomach ulcer and lost so much weight that people worried about her. Mr. French became incontinent, and she would sometimes wake up in a pool of his urine. The health aide hurt her back lifting him.

“I heard myself say one day, ‘I would never want anybody to do for me what I’m doing for Michael,’ ” Mrs. French said.

She had hoped to keep him at home until the end but knew it might not be possible. “This thing is going to kill both of us, and I don’t know who’s going first,” she told him.

In one way, she had an easier time than many other caregivers. Her husband never turned hostile. He retained a sweetness, and an acceptance of his illness that she found inspiring.

At one point, worried about finances, she considered laying off the aide and taking care of Michael alone. When members of her support group worried that the stress would kill her, she told them, “That might not be so bad.”

At Ms. Goldman’s urging, she saw a psychotherapist. He recommended medications to calm her. She filled the prescription but threw the pills away.

“I kind of feel that having gone through the anxiety and the worry is what let me get to the other side,” Mrs. French said.

While Mr. French was still well enough, they had discussed the possibility of a nursing home. So when the time came, it was not really a surprise.

“He knew it was something I didn’t want to do, because every time we spoke about it I would cry,” Mrs. French said. “When I told him that I had made arrangements, he said — and this is a man who can’t speak, so he had to muster every bit of energy he could — he said, ‘You did the best you could.’ ”

In April last year, Mrs. French placed her husband in a nursing home in Manhattan. Along with her sadness came feelings of relief and freedom. Soon after he was settled, she went out to dinner with friends for the first time in two years.

“At times, I ache for him to be back in the apartment,” she said. “But I ache for him to be back as him.”

She said that long after he ceased speaking, he continues to understand what she says.

“I remember asking his neurologist, ‘Will he know me?’ ” Mrs. French said. “And he said, ‘Oh, he’ll always know you. He might not be able to express it in a way that will be familiar to you or that you’ll like, but he’ll always know you.’ ”

She wondered what longings might drive her husband’s dreams:

“I asked him, ‘Do you talk in your dreams?’ and he said, ‘Yes.’ And I asked him, ‘Do you dream about me?’ And he said, ‘Yes.’ ”

She has had time to think about mortality, his and her own.

“Death to me has always been a wake-up call to live,” she said. “This is the endgame. Sometimes I get upset because I don’t think I have enough money, and sometimes I get upset because I think I do. You don’t necessarily want to live too long, but neither do you want to die.”

On most days, she spends several hours at the nursing home with her husband. She shaves him and sometimes climbs into bed with him to hold him and to nap together.

“Where do you carry my heart?” she asks him, referring to a poem they love by E. E. Cummings.

He smiles and pats his chest.

i carry your heart with me(i carry it in

my heart)i am never without it(anywhere

i go you go,my dear;and whatever is done

by only me is your doing,my darling)

i fear no fate(for you are my fate,my sweet)i want

no world(for beautiful you are my world,my true)

Excerpt reprinted from “Complete Poems: 1904-1962” by E. E. Cummings, ed. George J. Firmage. With the permission of the Liveright Publishing Corporation.

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.




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.


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

My Mom Eats Raw Chicken. Quit Complaining About Your Life.

Keeping mom at home is becoming increasingly difficult and stressful. I’ve found a home that I think will be a good fit — as good as they get. It has a solid reputation both locally and nationally. Still, it’s a home. Or more accurately, a floor. A floor filled with people who sit in wheelchairs or limp slowly around.

I’m not sure if mom has gotten worse or if my dad has simply reached a point where he realizes he cannot do this for another 5 years. Physically, she’s in good health. I don’t blame him. In fact, I’ve been pushing him to start thinking about placement again.

He goes back and forth. I can do this for another year. I don’t think I can do this. I want her to spend Christmas here in her home. Good days, bad days.

Mom requires constant care, especially when it comes to food. Dad has to chain up the refrigerator. I’ve heard of other caregivers doing this. I remember one girl from my support group in New York telling us a story about how her dad drank an entire bottle of olive oil. I think I laughed at the time. My mom did something similar, except her drink of choice was maple syrup. I didn’t laugh at that. Of course, maple syrup turned out to be a minor infraction. Dad said she tried to eat raw chicken… she was hungry, she went to the fridge, she took out food. Dad stopped her. She put up a fight. She wanted to eat. She’s strong.

If dementia doesn’t kill my mother, salmonella will.

This is my life. This is our life……………………………………………….

…………………………………….which explains why I get so incredibly bent out of shape when people complain, yet do nothing about their lot in life. I know a small handful of people who complain about their job. Constantly. I was one of those people, but I left. I got off my butt and did something. I find myself wanting to slam their heads against a wall in an attempt to remind them that they still have their minds……………… free will, choice….. it’s a gift, so do something. Quit complaining. Stop threatening to quit and take up a job at Starbucks… if you’re that miserable, do it. Work at Starbucks. I could use a discount. I want to remind these people that my mother’s life is over. She has no free will. Her daughter and husband are talking about institutionalizing her — right in front of her. She can’t understand us. She doesn’t connect the dots. She sits there with her hot water bottle starring into nothing. My mother’s mind is gone. Yours is fully intact. Mostly.

I know people who complain ad nauseum about their lover/spouse. I don’t understand how you can stay with someone who makes you so miserable — and who, if you become seriously ill, will be your primary caregiver. Do you want this person to change your diaper? Think about that. You get one year to hate your mate, then you should do something. Do something. Own your life. Seize it.

Life is short. Life is not always easy. It could be worse (and it could be a lot better aka Kate Middleton).

I know this sounds rather sanctimonious, but I don’t care. I don’t care. I’m sick of it. Sick of listening to people moan and complain about circumstance they can change — or at least try to change. You can try to change course. Try.

Don’t be that Eminem/Rhianna song.

My mother can’t even try.

Everyday is Groundhog’s Day for my mother and my father.

I didn’t create my current drama. Sometimes I feel sorry for myself and dwell on what I don’t have. But unlike a job or a spouse, I can’t get another mother. So when you feel sorry for yourself, why not spend a day with my mom…. you’ll quickly get a grip.

Life’s not that bad, and Starbucks offers its employees health insurance.

>>Flickr pic by I Believe I Can Fry

Gag Reflex

Good news. I discovered something new about myself. Poop makes me gag.

I’m OK with cat poop and I’ve never really experienced baby poop—although, I imagine that mothers have some built-in mechanism to prevent them from vomiting all over their off-spring—but my mother’s poop makes me gag.

In the last month or so, I’ve dealt with my mom pooping her pants on more than one occasion. It’s messy. Poop just gets everywhere. It smells. Seeing it caked on her underwear makes me want to run. Gag. Swallow. I hate it. Of course, I can’t. I try to help her get clean, passing along wet paper towels. Unrolling more toilet paper. She hands me back her dirty underwear and used paper towels. Gag. Swallow. She needs more paper towels. Gag. How did poop get on the wall? Gag. Swallow. She’s mostly cleaned up. I hope it didn’t get on your sleeve. That’ll have to do until we get home or I get you diapers or something. Gag. Good. You don’t smell too bad.

Oh, Shit. My car seat smells like poop.

FACT. Human poop is really hard to clean up once it soaks through.

My mom has another nasty poop-related habit. She insists on wiping with a bath towel when she’s home. This would be fine if she could flush it. Instead, she hangs the poop covered towel back on the towel rank. Gag. Swallow. I’ve tried to show her how to use toilet paper. She’s not that into it. Gag. Swallow. When she hangs her poop covered towel back on the rack, I have to wait until she’s finished to toss it in the wash. My dad does the same. Coming in after to throw the towel away or in the wash. Gag. Gag. Gag. I remember the first time I witnessed the towel in action. My dad and I were sitting on the bed talking about it. He looked tragically defeated.

Like a soldier being told that they can’t come home.


Flickr pic by Scott MacLeod Liddle

Demented Tantrums

I can usually tell when mom is a little more hyper than usual…… her energy to me feels scattered, like tiny shiny molecules all jumbled up. This vibe makes me anxious. We arrived. She sat. I read. 5 minutes before Mass started, the hyper-crazy took hold and my mom started to bolt—her two framed pictures of her boyfriend the priest in hand; and yes, they are the exact same pictures—I dropped my book and grabbed her and pulled her down to her seat.

She fought back.

I struggled to keep her in her seat.

She started to whine……………………….. “Dejame! Dejame. Porque no me dejas!?”

I started to plead. “Gaita, por favor. POR FAVOR SIENTASE!”

I tried threats…………………………………. Sit down or we are leaving. Like I could drag her out without causing my 73-year-old mother to suffer a complete meltdown.

In seconds, she was up again and I placed my arms around her and pulled her down to her seat. The women in our pew tried to distract her. “Margarita, mira esto! Margarita!” She would have none of that. To keep mighty mom in her seat, I flung my legs over her lap and tried to get her to focus on me. This went on for about 3 minutes.

The priest finally came down the aisle and again tried to jump into the aisle to invite him over to dinner—AGAIN!

He came over, held her hand and she started yelling. This yelling is a new behavior. I don’t think it’s her intention to scream at people………………… dad, says he’s noticed this new behavior as well. The yelling. It’s difficult. She yells out people’s names in the middle of mass, “Hola, mi Connie! Hola, mi Maria!” During Communion, she yells at the priest to come to dinner………………………………………. “Mi esposo la fruta mi esposo y yo queremos que tu la fruta en la FRUTA CON NOSOTROS!” She holds up the line for a good minute before taking in the Body of Christ.

AMEN MOM! AMEN! Move along.



Physically restraining your own mother takes a toll, I think, on you spirit. I mean, seriously? Who does that? Maybe in some movie where the mother lost her beloved child and she’s about to attack the person who did it, then you hold her back. But in my case, it’s another cut on my soul. Not a stab, but a slice. Another slice. I have about 1,000 of them. Slice. Scab. Slice. Scab. Slice. Scab.

After the whole Communion situation, I sat in our pew (and like a good Catholic mother, I made her get on her knees for the confessing of sins part, because she totally gets it—not at all. Bad habits die very hard) and started to cry.

I don’t cry very often over this mess. Not anymore. So when I do, it’s a result of emotion overload. I’m angry, embarrassed, hurt, resentful, tired and frustrated that I can’t make her behave like a normal human being.

I can’t control her.

She will not listen to me. Instead, she laughs at me.

My church friend Teresa came over and sat next to me. She held my hand. My mom, no longer able to sympathize, empathize or any-thize, was just looking around for her friends and rehearsing what she was going to say to the priest AGAIN.

After this, we went to Target. I bought her hotpink nail polish, went home and painted her nails.

>>Flick pick by Alice

She Didn’t Recognize Me

Mom and dad popped by the house the other day to pick me up and take me to the airport. Nothing unusual. Opened the door, the ‘rents walked in, hugged dad and prepared for my mom’s usual, OVER THE TOP, HUGS AND KISSES… “I luf you! I luf you! You’re my husband! You came out of ME!” But nothing. She said hello and just looked around.

She had no idea where she was or who I was! In fact, she seemed confused.

It was surreal. I wasn’t hurt or angry. I was actually glad she was calm while I gave dad the tour of my house and showed him where the cat food was stashed.

About 20 minutes later as we got into the care she asked me if I was her daughter.

She looked at my dad, “Is that our daughter?”

Yes Margo.

“Are you our daughter?”

Yes mom.


I’m not especially surprised that she didn’t recognize me. It’s part of the disease. It’s more trippy than anything, and I can’t change how this disease progresses, nor can I take it personally. You know, I think I’m so used to this life, this shattered life—that is the nature of her disease—that nothing really phases me.

Nothing really hurts anymore.

My So Called Demented Life

When my dad told me he was going to retire last October, I didn’t fully understand how he felt. You see, my mom—sweet as she may be—is a handful. She’s still very headstrong and there’s this part of her brain tells her she’s normal. Perfectly normal. Normal enough to drive. Normal enough to serve Communion. Normal enough to go off to the Supermarket. Normal enough to do her own thing when she wants. In sum, this is my mother: “You’re not the boss of me. I’m the boss of me. I do what I want.”

Like microwaving plastic?

She’s also a talker. She could talk you to death or to the madhouse. I don’t know what it is………………… maybe the repetitiveness of it all; but for some reason, having the same conversation over and over and over and over and over and over and over and over and over and over and over and over and over and over and over and over and over and over and over (see, you likely find this annoying) again causes even the most patient and sane person/saint to pull out their hair/wings. Trust me.

Dad retired because her behaviors and her challenging or demanding ways caused him enough stress—leaving the house and his wife behind with a caretaker who you hope stuck around until 5:00—that it just made more sense to stay home with her.

His sanity demanded it.

At first, I questioned his rationale, but now as her disease has caused her to morph yet again—more lost words, repetition of the same words, the constant phone calls and the fact that she banks on Sundays, my day with her—I’m understanding the stress of leaving her behind.

Next week I head off to San Diego for work. I’m scheduled to stay for five days—plus a Sunday. I try to spend extra non-Sunday time with her to make up for my absence…. This is ultimately more about my guilt, of course. Absolving it. Making myself feel better about going away and not being there for her—or for him. Totally selfish. It’s what we humans do to feel better about crap circumstances………. or to play the hero in the play we call life. Duh. Thing is, she wouldn’t care if I came 6 days a week, because it’s Sunday that she cares about. Now my own stress level is starting to escalate……………….. A) Because I’ll have little time to see her during the week so I can selfishly feel better about my role as the daughter…………. and B) My dad will have to contend with the raving lunatic she becomes when she can’t go to church.**

**I’ve asked dad not to take her because it’s 2 hours of holding her back physically from running into the aisles, spitting, asking the priest repeatedly to come to dinner—even during Communion (slows the line up), yelling “hola Connie, hola Alex, hola Maria” at the top of her lungs, random stares, finger pointing, etc. I think the man does enough that he need not endure the above + listening to the word of God….. a God who did this to my mom and his wife.

Our So Called Demented Life…………………………….

I know that I’m supposed to have a life outside THIS. And I do……………….. but I can’t help but feel guilty about things—like having dinner with my boyfriend and enjoying a bottle of wine, I think ‘my parents should be doing this’—and I can’t help feeling anxious and doubly guilty about leaving; and I’m doing it again when I go to Thailand, Laos and Vietnam in November—my excitement and lust for adventure took hold and I booked it. Bought my tickets and put down a deposit. Now, I feel wretched and incredibly anxious for leaving my dad with mom because I’ll be gone for at least 2, maybe 3 Sundays.

Living my life or living for her?

>>Flickr pic by Hilary the mammal

A Hug & A Rag… or Another Behavior

I love my mom. Might be hard to understand the range of emotions that go along with this disease—love, hate, contempt, resentment, humor, respect, disgust, horror, sadness, grief, sympathy, compassion—a roller coaster to say the least.

That’s why I blog.

I write so I can hopefully look back one day and make some sense of it all because this—this situation—is not how our lives were supposed to play out. Watching your mom deteriorate in such an inhumane way is not normal…………………………………. of course, there are moments…… sweet, touching moments where I’m really taken aback by who she is, what she’s become and how at her very core, she’s still such a lovely person. This disease does something to the brain—it strips it of all our masks. You’re no longer playing roles, pretending to be a character in the play of life—you are raw, grotesque, and what you see is what you get to the very core. Your essence is revealed and there’s no covering it up. No more hiding. You have no control. So while, I may think about the day my mom dies, I also think about how long it will take me to recover from her passing. You see, I will miss my mom. My mom’s sweet. She’s kind. She wants to be in the middle of everything………… mixing and mingling……………….the hostess…….. I saw a glimmer of her heart just the other Sunday.

A good thing because it’s so easy to lose sight of the positive.

Our neighbor came over and while I had no idea who she was, my mom immediately went over and kissed her…. “Hola, I luf you. I don’t speak English (in English), but I luf you, you’re so beautiful.” I was touched. I almost cried. Her genuine emotion and joy at seeing this woman was truly remarkable. Pure sweetness. Pure heart. You don’t see that sort of honesty in life anymore…….. and then I understand where I get my own lovey-dovey ways with those close to me. I am my mother’s daughter.

But with dementia, there’s the flip side……… and then there’s the rag……… a new behavior, actually. Here’s where I go from tender thoughts….. to having to walk away. My mom, in her usual TMI sort of way, told me that she had to pee (she does this by touching herself)… I scooted her along to the bathroom and then she opened a drawer to pull out a washcloth……….. confusion. What is she doing with that? She tells me in a mix of Spanish and words that make no sense unless you speak fluent dementia like myself that she’s using it to wipe herself.

“She uses that now to wipe,” said my dad who was sitting on the edge of the bed. “I don’t know when it started, but now I have to take it and wash it… she gets bent out of shape when I take them away.”

“She’s never done that before,” I said.

“Yeah, well she never used to do a lot of things….” he replied.

He looks exhausted.

She wipes herself with a washcloth and puts it back………………. I had to walk away. There’s always something with her, with this disease…………………. where she goes from incredibly sweet to vividly grotesque in an instant.

I don’t understand how her mind works. She doesn’t know my name, but she knows where I came from—she points to her belly and tells me that I came out of her.

I guess childbirth is the kind of pain that really does stick with you despite the mess of plaques and tangles and whatever else is gnawing at her cortex.

I don’t know. I really don’t know what to make of it all at the end of the day. This blog is a record of my experience and these are the moments that I see and capture…………………… my words are like a camera.

I don’t want to remember my mom as the woman who wipes with washcloth, so I try to temper it with her sweetness, her heart……. she’s there……..

Margarita Ritchie. Mom. Wife. Sister. Aunt. Cousin. Daughter. I think of her mother……. my grandmother…….. and I often wonder if she’s in heaven crying for her baby girl…………. just trying to reach out and hold her from beyond…. to comfort her daughter; to let her know that she’s safe and nothing can hurt her.

When I go deep into that place. I cry.

My heart bleeds for her.

TMI? Not In My World…

Mother’s Day has come and gone. It wasn’t really that big a deal. The only thing that bugs me now is when people insist on wishing—and repeating over and over—her a Happy Mother’s Day. People: She does not know it’s Mother’s Day. She doesn’t care. I don’t care anymore. She does not understand you. She is more concerned about the priest. NOT YOU. Not your attempt to treat her like a normal, healthy person. Please stop imposing YOUR need to be comfortable on her. On us.

We went to church. A typical Sunday. She spit on the floor—at one point, I actually caught her spit before she was able to hack another one. Oh mom. Those moments are when I really feel like her parental unit—able to react before she does something inappropriate or if she simply needs something. It doesn’t really bother me anymore.

Maybe I’m just numb to things…maybe I just don’t care because it is what it is and there’s not a thing I can do about it.

TMI or “Too Much Information,” doesn’t carry much weight in my world. My mom touches herself when she has to go to the bathroom like a child…. it’s my cue to hurry her off to the loo before she has an accident. She tells me when she has to poop…. again, my cue to rush her of bathroom. She uses childish words like, “caca.”

It’s funny, but not really.

She throws her food on the floor to feed the begging cat. I ask her to eat her own food and to please not share with the fat cat. She ignores me and laughs. She misbehaves. She laughs at her own reflection, and then proceeds to cry like a little girl. I ask, “what’s so funny? Are you funny? You’re not that funny.”

I don’t understand TMI. On my personal Facebook page the other day, I posted something about pooping—most people responded with, “TMI.” Huh? TMI?

My mother’s life is made up of a random series of TMI moments strung together.

TMI?  Are YOU uncomfortable? Why are YOU uncomfortable? What does it feel like?

I will not stop her from telling me when she has to go “caca”—what? The woman has to take a poop and I don’t need an accident. She spits. Fine. She pees with the door open—even in public (yes, I hold the door closed). Whatever.

TMI? Please. With this disease, there’s no such thing as TMI.

Your Demented Must-Haves…

The key to coping with a demented parent is to make life as easy as possible……. for YOU. By doing this, you’ll  make their life easier, and maybe avoid those occasional moments of humiliation in say Target or the Catholic Church — of course, they don’t seem to be too bothered by such moments, at least my demented mom doesn’t — in fact, she usually laughs (Symptoms: laughing inappropriately? Check)……. Of course, if this is new for you, trust me….. after a while, you won’t be bothered by most behaviors either.

OK, so here’s what I’ve gots to share — FYI, I’m much more savvy now that I live in PHX and spend more time with my mom — that it is incredibly important (I CANNOT STRESS THIS ENOUGH) to have a bag of supplies. For instance today, we were in church and all was going fairly well — a few tissue moments — but during the Our Father she had a coughing fit. Well, you know my mom spits and spit she did, but I was ready and caught it in my handy paper towel…. I am also very good at anticipating and, ultimately, catching spit-up. So here’s what you must always carry in your bag or glove compartment:

1. Antibacterial hand wipes or baby wipes (I’ve cleaned floors with them)

2. hand sanitizer like Purrell

3. Dry napkins or tissue

4. pen and paper (she remembers random things and forgets random things…)

I am actually going to start carrying mini snacks too or a juice box… my attempt to distract her when she’s obsessing over something like our priest or if she has to take a pill….

NOTE: Avoid gum. My mom swallows the stuff.

Any other tips? PLEASE SHARE!!