Category Archives: Death

Reverse Empty Nest Syndrome

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http://www.flickr.com/photos/run_dorkas_run/When I walked into the front door of my mother’s home, a little over two weeks had past since my last visit. Because of the influenza epidemic that turned Arizona bright red on the “flu view” map of the U.S., the home issued an edict banning practically all visits until it subsided. They told me that if I was healthy, I could check in on her as long as I wore a mask and doused my hands in sanitizer……………………………. I think they felt sorry for me. I sounded completely lost when they called to say no visitors: “Oh. How long? Really? I, mean, I’m fine. Can’t I just check in on her once in a while? I just worry.”

Unfortunately, my own immune system was obliterated not 24 hours after the ban was put in place.

Great timing.

Before this, the longest I had gone without seeing my mom was, maybe, 48 hours……………. When she spent time at the geriatric psych ward last February, I was told I had to wait for her to be assessed.

Torture.

Letting go is not my thing.

This time, I was too sick to get out of bed. Too sick to get in my car. Too sick to feign good health just so I could see her. I really missed my mom. I felt empty. Alone, really. Even though my mother can’t talk to me, her presence, while it makes me sad on the one hand, also gives me comfort. Of course, in some ways, this is what it’ll be like when she’s actually gone, and if this is a sign of things to come, it won’t be the relief I’m so desperately seeking.

Life without stressing over her wellbeing, her care, getting kicked out, her flooded diapers, if she’s in pain, Medicaid, finances………………………….

I feel physically, emotionally and mentally sick. I am physically, emotionally and mentally sick. Who am I kidding? Sure, this might be the flu, but it’s also years of fighting the disease that has consumed both my mother and my father.

I don’t expect either parent to be alive when I turn 40. That’s four years from now.

A reverse empty nest.

Last Monday, despite the ban, I decided to visit my mom. They said I could. I walked in expecting to be turned away. The thing is, I was really worried about her finger nails. What if they cut her nails too short or what if they didn’t cut them at all and she snagged her nail on something? What if she has a painful hang-nail? I brought my clippers.

I am perpetually drowning in the minutiae.

***

“Hey Patty, I know there’s the ban, but can I please see my mom? I’m not sick anymore.” 

“Hi Kathy, Sure. How are you feeling?” 

“I’m OK. I just miss my mom is all.”

“I know. I would feel the same way. I’ll give you a mask; just be sure to use the hand sanitizer.”

“Should I leave my bag here?”

“I don’t think that’s necessary.”

My mom’s asleep. Her head is hanging to the right like a rag doll. I take a black sweatshirt, fold it up and tuck it beneath her neck. The room is warm and  her radio is playing NPR. Aside from her crooked neck, she looks comfortable. I place my bag on the console nearby and plop down on the arm of her beige pleather chair. She finally wakes up, turns her head and stares at me. I smile. Of course, she can’t see my smile… I’m wearing a blue surgical mask that sits awkwardly on my nose. I squeeze the metal band on the nose in hopes of it fitting a little better (don’t these things come in small?)……………. UGH, now my glasses are fogging up. I consider taking the mask off… just so she can see who I am. What if she forgot who I am? It’s been over two weeks? I decide against removing the mask. Instead, I take her hand and hold it. She can’t really hold my hand; her brain isn’t firing off a signal that would tell her fingers to wrap around my hand.

A few seconds pass and she starts yelling.

“It’s me! Your daughter! I love you.”  She’s either horrified by my presence or saying hello.

Hard to tell.

Mom’s roommate is in the room. I’ll call her Margie, though that’s not her real name.

“Hey Margie, how are you? Have you been taking care of my mom?”

“Oh, sure.”

I don’t want to stay too long, it’s already 9:00 a.m. and I’m late for work. I rub mom’s head until she falls asleep again……………………………. I look at Margie and ask her to take care of my mom.

She obliges, of course.

I walk outside, talk with some of the caregivers, get in my car and drive to the office.

Just your typical Monday morning.

>>Flickr pic by Run Dorkas Run

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

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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

A Memoir: Until I Say Goodbye by Susan Spencer-Wendel

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Until I Say Goodbye

Until I Say Goodbye

I stumbled upon Susan Spencer-Wendel’s soon-to-be released book, Until I Say Good-Bye: My Year of Living with Joy early this morning. I haven’t read it yet. It doesn’t come out until next March. Still, I wanted to share because I think we’re going to be hearing a lot more about Spencer-Wendel and her tremendously touching memoir in the coming months.

Spencer-Wendel is a wife, a friend, a daughter, a mother of three and a former journalist living with amyotrophic lateral sclerosis (ALS) or Lou Gehrig’s disease. Her book is about last moments.

ALS is terminal and Spencer-Wendel is rapidly declining.

She created a bucket list and proceeded to cross off items from her list. Spencer-Wendel took several remarkable trips to the Yukon, to Budapest and to Cypress; and she created precious moments  for her family to cherish when she’s gone………….. like when she took her 14-year-old daughter to New York City to shop for her future wedding dress.

She writes, “As my beautiful daughter walks out of the dressing room in white silk, I will see her ten years in the future, in the back room right before her wedding, giddy and crying, overwhelmed by a moment I will never share. . . . When my only daughter thinks of me on her wedding day, as I hope she will, I want her to think of my smile when I say to her at Kleinfeld’s, ‘You are my beautiful.’”

By the time the publishing company Harper Collins caught wind of Spencer-Wendel and offered her a book deal, she had lost the use of most of her fingers as a result of the disease.

She wrote the book anyway.

Spencer-Wendel literally typed out her memoir using her right thumb on an iPhone.

She finished her book in just three months.

HarperCollins describes her story as “a powerfully emotional, inspirational and irrepressibly joyous look at the things that matter most… Until I Say Goodbye is the fulfillment of her final wish: ‘To make people laugh and cry and hug their children and joke with their friends and dwell in how wonderful it is to be alive.’”

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

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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

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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.

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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

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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.

………………..