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

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

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

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

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

I prolonged her suffering.

What did I do?

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

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

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

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

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

He gave me a hug and left.

Is she dying?

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

Welcome to Purgatory.

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

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

Thank you Costco for bulk Advil.

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

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

It’s that shitty.

But it will get better.

>>Flickr photo by archangel_raphael

10 Comments

  1. Oh how I get it. All the parts ! It is a pergatory that traps us all. Someone said to me , ” don’t you want to just run away?”. Well YES but we’re talking my mom. A woman who loved and cared and read and sewed and painted and planted and knew all the wildflowers, and birds and loved her children and grandchildren in a magical way! She was the nurturer, the magnificent cook she was “everyones’s ” mom. And so reality–no I will not run away , I will do, as you and thousands of others like us. We stay, we cry, we laugh when some think we’re crazy and wait and learn more about dementia than I ever thought was possible, and yet my mom won’t be who she was nor will we. So breathe, walk, breathe … Until the next level of “learning” faces us… Again

  2. Kathy,
    What a horrible mess you find yourself in–this is such a terrible disease. I am glad you were able to get hospice involved–I have found they are not only helpful for your mom but they will also be able to offer you some support. Hospice workers will be willing to have the hard conversations with you that so many others have refused to have. They do understand the difference between quality of life and number of days.

    I only came across your blog a week or so ago but I have mentioned it as a resource to several of my families already and all have reported back that when they read you they know someone gets what they have been going through. While I’m sure it is cold comfort, I want you to know that you are making a positive impact on many, many others. Thank you.

    I am holding you and your mom in my thoughts and wishing for each of you peace.

    Ann

  3. yes… yes… yes… we are traveling through the valley of the shadow of death… thank you for being with your mother on this horrible journey… I hope we all find light and life at the other end.

  4. I’m so sorry to hear you and your mom are going through all of this. I’m glad you have a support system. I know I tend to over-think our decisions in these situations, when I should allow instinct and intuition to take over.

    It’s clear from all of your posts how much you love your mother. In the end, that’s what really matters.

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