Knowledge

It's as if a switch has been flipped. 

Hospice began and within days he has become more anxious.  More afraid to be away from me for even a moment.  Pacing, wandering cluelessly through the house.

The moment I get him settled and tucked in, he's up and needing to get to some unknown place.  Needing to complete a task that eludes him.

He also now fights sleep.  He is the worst in the evenings. Sleeping 5 or 6 hours per night, where it used to be 12.  I'm exhausted.  He's exhausted.  We both wear the dark circles of fatigue.  However, I fear he suffers far more than I.

His nurses have been wonderful and attentive.  Every struggle he experiences, they adjust his meds.  Their dedication to finding the right balance to calm him brings me peace.

Hospice workers are the only professionals who give it to me straight, with compassion.  They give me gentle clarity around what is happening and what to expect.  In the frequent moments where I question myself about doing too little or not enough, I am softly but bluntly reminded... at this point, there is no such thing as the outcome can not be changed.

This transition ignites my anger.  The next phase of my grief.  Which in turn, gives me clarity on how I might use these blogs once he leaves us.

Knowledge...

The lack of education available to caregivers is astounding.  More alarming is the lack of knowledge our Medical professionals possess.

Early Onset progresses quicker than Advanced Age Alzheimer's.  We have less time to adjust to the changes our loved ones go through.  

NO ONE WARNS US!

No one tells us exactly what to expect.  What's coming.  How ugly things will get.  How we will feel.  How it will change us.  Yet, it is all textbook.

Furthermore, unless you happen to stumble on a reliable support group or community, you will begin to believe you are losing your mind.

Our brains are unable to fathom that the things were are witnessing evolve, are even remotely possible.  We question our own account of reality.  Then, we beat ourselves up over the time wasted on providing what our loved ones needed while searching for understanding.

No one tells us that we will have to become the experts.  That we will need to advocate and demand what is needed.  

No one tells us that our doctors will withhold the meds we request to keep the suffering at bay.  Being given the excuse that addiction is a concern is a joke and frankly,  insulting.

Nothing prepares you for being denied those same meds that you fought so fiercely to obtain, because the insurance company doesn't want to pay for it.  

Hospice professionals are the only ones who truly educate you.  Sadly, by then, death is looming just around the corner.

So, my goal is to promote and embrace "knowledge is power".  This age old cliche' holds so much truth.  

My hope is that in reading these blogs ... whether a caregiver, a family member, a friend or simply someone who stumbled across our journey ... 

You gain something you lacked before.  Understanding, compassion, strength, inspiration and even a little heartbreak.

I hope you've gained knowledge.

I hope it touches you.  Comforts you.  Enrages you.

And mostly, I hope it changes you.  

Finding the cure... Together

Cheers💜