Adventures in Alzheimer’s – stress and non-existent expectations

by Julie Frayn on August 24, 2015 in  Adventures in Alzheimer's

I recently read a Facebook meme that said stress is the gap between expectation and reality.

I call bullshit.

If that were true, then it would be a simple matter of reducing expectations to eliminate stress. Well, when dealing with a relative with Alzheimer’s, it doesn’t matter how deep in the well you plunge your expectations, doesn’t matter if you drown them, choke them, slice and dice them, eliminate them altogether. Reality sucks. It blows. Blows big, fat chunks. No lowered level of expectation prepares you for this level of crazy. For watching your mother quiver in fear over what the TV people tell her. For not being able to calm her, to convince her that we are not under siege. That she will not die before sunrise.

I also saw a well-meaning Facebook post about how to deal with aging parents. About how we should give them the same patience as their minds go as they gave us, as children, when our minds grew.

Bullshit, part deux. Talk about stress. That little post made me feel inadequate. An awful daughter. A shitty caregiver. Why? Because I get frustrated, annoyed, and on a rare occasion, pissed right off.

Here’s the key difference. When you are a parent raising a child, there is growth. That child is learning. They will get more aware, more cognitive, and better able to communicate with you on your level as they grow up. And when babies poop their pants, no matter how it smells, it’s just plain adorable.

When you are an adult child caring for a parent with dementia, there is no growth. Your parent is dying. She will get less aware, less cognitive, unable to communicate with you on any level. She will get combative and angry, will hide her stuff and call you at three in the morning (the magic hour for reasons I’ve yet to figure out) to beg for help because the TV people told her she was on fire. And when your parent poops on her toilet seat, and you find it? Not adorable. When she starts pooping in her pants, I won’t deal with it. I can’t. Cue the long-term care facility.

Maybe I’m just a shitty person. That’s what all this Facebook crap is making me feel like. I am a doer, not a caregiver. Take over the banking? No problem. Need to see a doctor? I can take you! You need a new door? New drapes? Groceries? I can handle that. Need to replace the old cement steps with something wider and install railings outside? I can arrange that. Hot water heater broken? I’m on it! Wipe your poopy ass?

*crickets*

I’ve said it before. There’s a reason I’m an accountant.

So, shitty daughter perhaps, but I’m so okay with that. I do a lot. I do my best. It simply has to be good enough.

FUCK OFF

FUCK OFF

Maybe Facebook is the problem.

{ 17 comments… read them below or add one }

Carolyn Frayn August 24, 2015 at 1:37 pm

You’re the best daughter… and ongoing motivational positive thinking happy is as happy does platitudes are delusional crap, unrealistic, frustrating and aggravating. Embrace every fucking feeling you have, that’s how we deal with the shitty. Rock on, love you tons.

Here’s a meme I read this morning. “Shoot for the moon. Even if you miss, you’ll be really far away from me with your motivational nonsense.”

Reply

Knot Telling August 25, 2015 at 12:28 am

Carolyn, best. meme. ever.

Julie Frayn August 25, 2015 at 6:22 am

I love that moon thing. Made my day :) Sometimes I don’t want to embrace the feelings. Sometimes I want to kick them in the balls.

Carolyn Frayn August 26, 2015 at 9:24 am

I’m glad you both enjoyed that… and I agree, kicking them in the balls works too.

Nelson Armstrong August 24, 2015 at 1:47 pm

My brother dealt with things up to and including changing my sister in laws dirty diapers until one day she had another seizure and said he couldn’t do it anymore. The impact on him as the caregiver was far greater than the impact on her. He went through the anger, non-recognition, recognition, hallucinations and everything that goes along with it with her. Once she was hospitalized and then placed in a care facility, he recognized he was like the frog analogy. If you try to put a frog in boiling water, it will try to jump out. However, if you put the frog in cold water and slowly raise the temperature, it will cook to death.

As much as you love your mother, don’t become that frog.

Reply

Julie Frayn August 25, 2015 at 6:23 am

That is one of my favourites, the frog analogy. I won’t be a butt-wiping frog. My gag reflex won’t allow it to happen! Sorry about your brother and SIL. Oh, it’s a sad irony that we start and end in diapers and unable to care for ourselves. Hoping for a bolt of lightening before that.

Mary Smith August 24, 2015 at 2:06 pm

Well said, Julie. I hate all that bullshit motivational stuff. I remember when my mum was dying of cancer she got so upset reading a story about a cancer patient running a marathon to raise fund – she felt like she was being a total wimp and should be out there doing amazing stuff. So, not only did she have to deal with a cancer which was killing her she had to deal with feelings of inadequacy as well.
We all have to decide what we can do and what we can’t. And no one should judge us. I was pissed off because for weeks after I moved in with dad none of the neighbours called. It turned out they were horrified I was NOT putting dad in a care home. You can’t win!
I was lucky in a way because dad had vascular dementia with a side order of Alzheimers and the Alzheimer never got too bad so we didn’t have to deal with things like your mum thinking people on the television are out to get her.
It sucks, whichever way it gets them – and we’re next.

Reply

Julie Frayn August 25, 2015 at 6:26 am

Mary, my sister (she of the stage IV metastatic breast cancer) goes through some of that. I think of you often when I’m dealing with Mom. I admire that you have the strength to move in with your Dad and handle the daily, em, stuff…. And no, you can’t win when trying to please the outside world. I’m just trying to get by and not lose me or my family in the fray.

Kathi August 24, 2015 at 2:33 pm

Don’t listen to that happy horseshit, babe. I sure don’t. Those of us who face up to reality and admit it sucks are the ones who get things done. You show up. Which is more than a lot of my dementia patients’ families do. Ergo, you rock.

Reply

Julie Frayn August 25, 2015 at 6:27 am

Thanks for that :). Showing up is job one! xo.

Amber Jerome~Norrgard August 24, 2015 at 9:37 pm

You’re a damn good daughter my friend. I’m proud of you. You’re in my thoughts lovie.

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Julie Frayn August 25, 2015 at 6:27 am

mwah to you. See you in three weeks!

Knot Telling August 25, 2015 at 12:27 am

Sometimes reality sucks. That’s reality. Being a bliss ninny won’t change it.

You are incredible, Julie, and don’t let anyone or anything tell you different!

Reply

Julie Frayn August 25, 2015 at 6:29 am

Bliss ninny. I love that. More incredible is my baby girl who deals with this as much if not more than I do. More than anyone in the family. I worry for her sanity. But she returns to school in 2 weeks and we are going to be passing of much of the daily med stuff to the professionals soon. Especially since mom keeps hiding her night meds instead of taking them.

Kathi August 25, 2015 at 3:37 pm

Ah! Bliss ninny! Love it!

Jackie Weger August 25, 2015 at 12:52 pm

Julie! I love you for telling it like it is! I see the old adage at work here: Walk in my shoes… ’cause honey they will pinch you exactly as they pinch me. As for that well-meaning Facebook post about how to deal with aging parents…we should give them the same patience as their minds go as they gave us, as children, when our minds grew. My parents didn’t have any patience! I saw each through to the end anyway. People offering platitudes often don’t have common sense. I was once told, “Let go and let God…Huh? Let him do what? The washing and ironing? Cooking? Feed, shelter and clothe my my five kids? Work my job 10 hours a day? Golly. I don’t get it why we women as daughters/sisters/aunts/mothers are expected to be all things to every person in our lives. We can’t. You can’t. You are actually an amazing woman. I’m honored to know you. Sending you hugs aplenty.

Reply

Julie Frayn August 26, 2015 at 10:29 pm

My Mom had patience. I got lucky with my parents. I’m honoured to know you too, lady. You rock. Oh, and the let God thing? Yeah, I NEVER got that… Of course, I don’t let God do a damn thing, so . . . you know. :)

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