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
On the way to visit my mother one recent rainy afternoon, I stopped in, after quite some constant prodding, to see my insurance salesman. He was pressing his efforts to sell me a long-term-care policy with a pitch about how much I’d save if I bought it now, before the rates were set to precipitously rise. For $5,000 per year, I’d receive, when I needed it, a daily sum to cover my future nursing costs. With an annual inflation adjustment of 5 percent, I could get in my dotage (or the people caring for me would get) as much as $900 a day. My mother carries such a policy, and it pays, in 2012 dollars, $180 a day—a fair idea of where heath-care costs are going.
I am, as my insurance man pointed out, a “sweet spot” candidate. Not only do I have the cash (though not enough to self-finance my decline) but a realistic view: Like so many people in our fifties—in my experience almost everybody—I have a parent in an advanced stage of terminal breakdown.
It’s what my peers talk about: our parents’ horror show. From the outside—at the office, restaurants, cocktail parties—we all seem perfectly secure and substantial. But in a room somewhere, hidden from view, we occupy this other, unimaginable life.
I didn’t need to be schooled in the realities of long-term care: The costs for my mother, who is 86 and who, for the past eighteen months, has not been able to walk, talk, or to address her most minimal needs and, to boot, is absent a short-term memory, come in at about $17,000 a month. And while her LTC insurance hardly covers all of that, I’m certainly grateful she had the foresight to carry such a policy. (Although John Hancock, the carrier, has never paid on time, and all payments involve hours of being on hold with its invariably unhelpful help-line operators—and please fax them, don’t e-mail.) My three children deserve as much.
And yet, on the verge of writing the check (that is, the first LTC check), I backed up.
We make certain assumptions about the necessity of care. It’s an individual and, depending on where you stand in the great health-care debate, a national responsibility. It is what’s demanded of us, this extraordinary effort. For my mother, my siblings and I do what we are supposed to do. My children, I don’t doubt, will do the same.
And yet, I will tell you, what I feel most intensely when I sit by my mother’s bed is a crushing sense of guilt for keeping her alive. Who can accept such suffering—who can so conscientiously facilitate it?
“Why do we want to cure cancer? Why do we want everybody to stop smoking? For this?” wailed a friend of mine with two long-ailing and yet tenacious in-laws.
In 1990, there were slightly more than 3 million Americans over the age of 85. Now there are almost 6 million. By 2050 there will be 19 million—approaching 5 percent of the population. There are various ways to look at this. If you are responsible for governmental budgets, it’s a knotty policy issue. If you are in marketing, it suggests new opportunities (and not just Depends). If you are my age, it seems amazingly optimistic. Age is one of the great modern adventures, a technological marvel—we’re given several more youthful-ish decades if we take care of ourselves. Almost nobody, at least openly, sees this for its ultimate, dismaying, unintended consequence: By promoting longevity and technologically inhibiting death, we have created a new biological status held by an ever-growing part of the nation, a no-exit state that persists longer and longer, one that is nearly as remote from life as death, but which, unlike death, requires vast service, indentured servitude really, and resources.
This is not anomalous; this is the norm.
The traditional exits, of a sudden heart attack, of dying in one’s sleep, of unreasonably dropping dead in the street, of even a terminal illness, are now exotic ways of going. The longer you live the longer it will take to die. The better you have lived the worse you may die. The healthier you are—through careful diet, diligent exercise, and attentive medical scrutiny—the harder it is to die. Part of the advance in life expectancy is that we have technologically inhibited the ultimate event. We have fought natural causes to almost a draw. If you eliminate smokers, drinkers, other substance abusers, the obese, and the fatally ill, you are left with a rapidly growing demographic segment peculiarly resistant to death’s appointment—though far, far, far from healthy.
Sometimes we comb my mother’s hair in silly dos, or photograph her in funny hats—a gallows but helpful humor: Contrary to the comedian’s maxim, comedy is easy, dying hard. Better plan on two years minimum, my insurance agent says, of this stub period of life—and possibly much more.
Mike Wallace, that indefatigable network newsman, died last month in a burst of stories about his accomplishments and character. I focused, though, on a lesser element in the Times’ obituary, that traditional wave-away line: “He had been ill for several years.”
“What does that mean?” I tweeted the young reporter whose byline was on the obit. Someone else responded that it meant Wallace was old. Duh! But then I was pointed to a Washington Post story mentioning dementia. The Times shortly provided an update: Wallace had had bypass surgery four years ago and had been at a facility in Connecticut ever since.
This is not just a drawn-out, stoic, and heroic long good-bye. This is human carnage. Seventy percent of those older than 80 have a chronic disability, according to one study; 53 percent in this group have at least one severe disability; and 36 percent have moderate to severe cognitive impairments; you definitely don’t want to know what’s considered to be a moderate impairment.
From a young and healthy perspective, we tend to look at dementia as merely Alzheimer’s—a cancerlike bullet, an unfortunate genetic fate, which, with luck, we’ll avoid. In fact, Alzheimer’s is just one form—not, as it happens, my mother’s—of the ever-more-encompassing conditions of cognitive collapse that are the partners and the price of longevity.
There are now more than 5 million demented Americans. By 2050, upward of 15 million of us will have lost our minds.
Speaking of price: This year, the costs of dementia care will be $200 billion. By 2050, $1 trillion.
Make no mistake, the purpose of long-term-care insurance is to help finance some of the greatest misery and suffering human beings have yet devised.
I hesitate to give my mother a personality here. It is the argument I have with myself everyday—she is not who she was; do not force her to endure because of what she once was. Do not sentimentalize. And yet … that’s the bind: She remains my mother.
We lost ALTCS………………… Arizona’s version of Medicaid. You see, no one who is actually Middle Class (that means you) can afford quality nursing home care when the time comes…………….
A good nursing home can run around $3,000-$4,000 a month. That’s a lot of green. Frankly, I don’t know how people do it without aid from the state. Anyway, avoiding the gory details, we lost our insurance and had to reapply for ALTCS again. The process is long, tedious, detailed and incredible stressful. So needless-to-say, when I found out we were dropped, I went home, sat on my sofa and cried. I contemplated leaping out my window…………….. I didn’t want to go through this process again. I didn’t want to have to deal with this……………… yet again.
How could this have happened? I know how it happened. I don’t want to get into details. It only stresses me out.
I will say, that situation was the beginning of my end…………… I’m over it.
September is World Alzheimer’s Awareness Month, and the entire month is dedicated to awareness. Awareness of this horrible disease………………. or at least one aspect of it: Alzheimer’s disease (in small print: and other related dementias).
I struggled to do my part this year. I tweeted. I wrote Six Word Memoirs about her disease. I turned the My Demented Mom Facebook page purple.
Clearly, I didn’t do that much. Nothing especially worth while. I didn’t skydive like some advocates. I struggled to churn out my story in six words………………..
I mean, why bother?
I’m well aware of the effects of this disease…………….. or rather, frontotemporal dementia a.k.a, “the other related dementia”………….. and let’s face it, if you don’t have a parent, friend or spouse with the disease, you probably don’t care that much about it…………… Sure, you’ll pay it lip service because that’s what nice people do. But it’t not top of mind for you……………. you don’t write emails to politicians pleading with them to do something about this disease that likely WILL affect someone you know and love…………. in 10-20 years. It’s OK. I understand. Truly. Do you think Sjorgren’s Syndrome is top of mind for me? Do you think I own a T-shirt? The answer is no.
So, here I am telling people my story. I have been since 2007 I think. But it’s getting harder and harder to write about it. I’m tired of fighting it. I’m tried of trying to make YOU care about me.
It’s funny how people forget about you……………… about HER. My mom’s been sleeping a lot so we’ve missed Mass these past few weeks……………. no phone calls. No visits to the house. No one seems too worried.
She could have died and no one would even know.
And don’t think attending her funeral will absolve you of years of absence.
So, yes. I’m angry. Tired. Frustrated. Frazzled. Irritable. Stressed out.
I’m sick of this disease. I’m tired of seeing it rape my mother’s mind………….. and the worst part is, she’s physically healthy. I have to watch this thing eat away at her gray matter………. but it won’t take her out.
Her dementia is gnawing away at her, and will continue to do so until she’s a listless mass of human flesh with a heartbeat. What will God do with her soul then?
So here we are……… playing a waiting game with the state. Hoping things will work out because, well, they have to. She has to go to a nursing home. It’s time.
This disease has cheated my mom out of her life. It has robbed my dad of his life………….. and peace of mind. It has forced me, more than once, to make sacrifices and hard choices. I started life over in 2009 with little money, no job and two cats so I could be here with my family, to participate in this grotesque life experience.
Now guess what?
I’m over it.
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.
Watching my mom become agitated and anxious when she’s in my own home is stressful. We have our routine together and it doesn’t usually involve trekking over to my house, just a 15 minute drive away. However, when we do mix things up a bit and end up at my place, I can’t help but wonder she becomes so anxious because she remembers her brief stint in a nursing home and geriatric psych ward. I mean, she must, or why would she get so distraught when she’s away from her own home? Yes, it’s part of her disease. She knows what she knows and it isn’t much. So, it’s not surprising when she follows my dad around like a puppy…………………………… she does the same with me. I sometimes use the handicapped bathroom so she can be in the same space with me……………………………………………………..
My mother is OK going to church. She can hang at Target. She can usually do Ross too…………………………………………………… but taking her out of her comfort zone for very long, it’s like the walls are closing in on her…………….. She can’t sit comfortably. She’s on edge. She keeps asking to go home. She spits on the floor. So I wonder, did I cause her to feel this way? Over a year ago, we placed my mom thinking it was the right thing. It wasn’t. It was an epic disaster that spanned a month. My mom was on the verge of undergoing electroconvulsive therapy before my dad had had enough and sprung her from the looney bin. Yes, the looney bin. And yes, ECT, shock therapy. The doctor thought my then 73 year old mother was bipolar…………………………………………… not demented.
So now, I worry and wonder if my mom has some post traumatic stress as a result of her month in hell. I can only hope that her disease deleted that time in her life.