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Stuck in the Middle of YOU!
By Joyce Aleshire

Strange words to use to describe a caregiving experience, but for me, the word fit. Let me begin by stating I NEVER felt “stuck” in my caregiving for my husband or mother; it was indeed a privilege to care for both. However, sometimes the circumstances we find ourselves in while in the midst of our caregiving, well, that’s where the stuck part comes in.

Caregivers are usually thrown into their caregiving role without medical knowledge, not knowing what’s in store for them or the amount of time and energy it will entail on a daily basis until they actually are caring for their loved-one.

With a loved one’s diagnosis of cancer, you soon realize that diagnosis affects the whole family. Your normal routine is disrupted by doctor appointments, consults, maybe even surgery, chemo or radiation.

You’ve heard the words “chemo” and “radiation” before, but never in dealing with your loved one. “Margins” and “staging”? Now I’m stuck not knowing exactly what all this means and how it pertains to my loved one! With the help of doctors, nurses, and your own research, you become a little more comfortable with the verbiage.

Those doctor appointments I mentioned—I didn’t realize there’d be so many, plus all the testing and then going back to get the results of the tests!  Wait.  I think I had a few doctor appointments of my own in in there as well.  You know; routine maintenance!  Yearly physical, dentist, eye doctor, etc. I’m stuck trying to decide which doctor appointments I need to keep for myself.  My loved one doesn’t have a choice; they are all necessary! I’ll just put mine on the back burner for now, until things slow down.

Things don’t slow down.  They get progressively worse in a very short period of time.  Mom’s not going to get better; she’s on a morphine patch, changed every three days to keep her comfortable.  She doesn’t seem to be in pain as she drifts in and out of consciousness. I’m stuck again, watching helplessly as I know the end is near and there is nothing I can do.

Was told by a doctor that a decision of whether to resuscitate or not had to be made now. Mom and I never had that discussion; I don’t know what she would want. I know what I want—I don’t want to let her go!!  Painfully stuck again; but this time, for selfish reasons. This is so hard.  Struggled for a couple days trying to reach a decision.  Depended on doctors, nurse and God for guidance.

Next step: making funeral arrangements ahead of time. I’m making these arrangements and Mom is still alive. This bothered me the most! Guilt set in. How dare I?  Yet this was what I was advised. Stuck with my emotions. Planning and still not knowing what she’d like. I had a pretty good idea; just hoped she like it.

I was stuck a lot in my caregiving and only touched the surface, here, but I think anyone who has been a caregiver or is caregiving now can relate.  It doesn’t matter how many times you get stuck in your caregiving. You’ll always find a way to get through those rough times.

As I look back, I wouldn’t change one stuck. It helped me help others who ended up stuck in similar situations. If you find yourself stuck in your caregiving, have faith you’re doing just fine!

Joyce Aleshire is the facilitator of a Cancer Caregiver Support Group in Ohio.

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