keeping on

jen ht · September 5

Hi community,

I really wanted to title this something like "struggle bus" or "it gets better on some days, right?"

I want to keep myself going in a positive direction. At least the most positive that I can muster up, but I'm honestly not having much luck with it today.

So I re-read some words I saved from here by Harshedbuzz and am adapting it for my situation today:

I am able to push through and do what absolutely needs doing but little else. My people/pets have food, clean laundry and clean bathrooms. What has helped me take on the vast list of things that need doing is to be gentle with myself and give myself one or two small tasks to do daily. Today that's walking the dog and checking on mom.
-adapted from a Harshedbuzz reply

With the struggle bus, some days you are alone and some days it's crowded.

If you're feeling alone on the struggle bus today, I'm right here with ya. ♡

Sending love your way,

jen

M1 · September 5

Right there with you jen. Some days it's only one little thing. Some days it drives me crazy, but that has to be okay. Then something will shift. But i want the big things to shift, I want an end to the suffering, I want to move on. But not there yet. So the dog wakes me up at 5 am and we get up to do it again, as Jackson Browne said...

jen ht · September 5

Great song. Thank you for replying. You all here keep me going. I really appreciate it. I think I'll listen to some Jackson Browne on the drive home.

Mama’sGirl · September 6

thanks, I really needed that.

Anonymousjpl123 · September 7

Right there with you. I say this is a marathon not a sprint because I truly believe that. I think sometimes every day there is this stress in the back of my head. One thing that helped me a lot is that my sibling told me they also feel this, even though they are literally not involved at all in my mom’s daily care.

We keep going. I am with you. You’re definitely not alone on the struggle bus and there’s nothing wrong with you for feeling each day is a drain sometimes.

Lucy C · September 10

https://alzconnected.org/discussion/comment/221965#Comment_221965

Linda Ronstadt: "You Tell Me that I'm Falling Down"

https://www.youtube.com/watch?v=giU6iaV-so0

Morag1212 · September 10

https://alzconnected.org/discussion/70544/keeping-on

Hi Jen I’m new to all this and the group. Yesterday was a bad day for me I have never reached out before but mum for the first time ever got so angry and nasty to me it was a shock never has she done this before in my whole life and I’m 52. All because I’m trying to get her to bathe. I hope and pray she doesn’t start to associate me with bathing and become a fear of me xx

Rob's Daughter · September 10

Oh! Sometimes I'm on this bus for too long. (I think it gets lost). Had a couple of deaths in the family and I wished it was my parents… isn't that awful??… but I know I am not alone in feeling this way. I just want an end to their suffering… I know it isn't them right now, and their quality of life is suffering. Tunes do help… maybe we can stop for ice cream?

Lucy C · September 10

https://alzconnected.org/discussion/comment/222457#Comment_222457

The bus is pulling into a 1950s drive-in right now… Just decide if you want a cup, a cone, a stick, or a banana-split. Since virtual calories don't cost anything, I'm going for the banana-split, piled with real whipped cream. 🍨

Lucy C · September 10

https://alzconnected.org/discussion/comment/222431#Comment_222431

Bathing can get to be a big struggle. A lot of members here have some experience with that. Some have recommended wipes that don't require rinsing; some people have even used shaving cream as a kind of "soap" and just wipe it off. Sometimes you can get away with "cleaning" the person without actually bathing them.

Big hugs for a rough day!

JM27 · September 19

Hi Jen,

Also right there with you on the struggle bus. Sometimes I feel like Bill Murry in groundhog day.

jen ht · September 25

I hear you. Today I'm having one of the "this is heartbreaking" days. Some days are more difficult than others - to varying degrees and in a variety of ways. Today the mental/emotional part is feeling heavy. Or maybe I'm just tired and need to go to bed early.

Take care, all! You are not alone.

Quilting brings calm · September 26

oh yes, Jen. It’s exhausting every way- mental, emotional, physical. Going to bed early is a valid thing to do

Ci2Ci · September 26

https://alzconnected.org/discussion/70544/keeping-on

I naively thought that when my mother went into long-term care at a nursing home memory care unit that I'd be able to exit the Struggle Bus. So so wrong. My stress level possibly even increased. Now, having to deal with state Medicaid-LTC (applying, complying, reapplying); useless Medicaid managed care providers; and a truly horrible SNF (no other options at the present) have greatly diminished my own quality of life. A year-and-a-half later, I still don't have a job or health insurance, let alone a life. I'm on the Struggle Bus that connects with the Survival Bus….it is exhausting! At least when I was my mother's 24/7/265 caretaker, I had more control of her care to ensure that it was attentive & good. But, honestly, it is soul-crushing either way.

Ci2Ci · September 26

…oh, and outside visiting doctors & nurses who are unresponsive/non-communicative to "the patient" (patient legal Healthcare Surrogate). What they are good at is billing Medicare 3x week for whatever excuse they're using.

keeping on

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