What if……

Throughout your childhood and adolescence, perhaps continuing into adulthood, your parent (s) abused you mentally or physically.

You endured this life and every single thing , emotion and effect.  Then, that parent ( s) is diagnosed with Dementia.

You have contacted the police numerous times, you have made reports, you appeared in court and bared your soul tell all those who were there the intimate deals if your life.

You have isolated yourself from them, no one for years has had respect for that family member.  There has been no contact, no connection but deep down that connection, that deep family pull to care finds its way to the surface.  Your parents have no one…..but you.

Despite the horror you faced you make the enormous choice to change your life, not nessesarily forgive, but change your life to care for your parent, a parent that nearly destroyed you.

This happens. This is real life.

Dementia in all forms does not discriminate. Let’s be real.  There is no etherical divination.

Care, in all forms needs to be examined.  In the above real life situation, dual priority care needs to be realized and administered.

An examination of the current prospective and guidelines for care that our world society creens on, in my opinion, is misplaced, outdated.

Care, at every stage, development and crisis point is vastly different. The need for specific care at each stage as vastly different and dynamic as the personalities you are caring for.

What if…….

Your parental relationship was so absolutely wonderful for your full life.  You grew together, enjoyed a life of endearment and complete love and respect. Then at the year of your mom’s 50 yr span on this earth, you notice things……odd thing’s…..changes so unlike her character, personality and life long habits.

That is what happened in our lives. 

How do you define the type of care needed for myself and my daughter.  It is certainly different.

Understandably, horribly even, the care needed at the end and nearing end of this disease is painstakingly similar; all carepartners will endure tasking bathing their parent, ambulatory assistance, nutritional assurances and incontinence upkeep. But have you ever truly understood or thought of what life changes that child has made in order to make sure their loved one is loved without barrier, judgement or second thought.  Then you must make even bigger desicions and choices once you can no longer balance the greater need and love….you have to give your loved one away.  That is asking so much of any person. Who will help guide you.

This whole, entire gigantic life altering bullshit is just pissing me off.

Honestly, who is looking at all the first steps, all the time prior to this disease taking our selves away from our own existence; the time before we become the over stated and off the cuff ” shell of a person”.

The mainstay Alzheimer’s groups asking for your donations are predominantly still focused on aging Alzheimer’s.  The information available clearly reflects my statement above.

Early onset of all forms of Dementia have been growing exponentially for more that 20 years.  It is now verging on epidemic.

Carepartners in the PRIME GROWTH of their lives are now, in all aspects, careing for parents in the PRIME of their lives. It is unforgivable.

Sequestering the available unrealistic sanctions of professionally prescribed care attributes no longer works.  The ideas are outdated and somewhat redundant.

Someone has to take a stand. This is the beginning of my stand, my platform and my voice.  To be clear, I am one of many.

Collectively, we, those diagnosed and those providing the vast ever-changing care perspectives will make those changes.

Step by step. Story by Story.

To remain stagnated in the aide provided in all levels and the suppression of critical care objectives is offensive and unjust.  The suppression of those with voices, personalities and the gumption to share the most relevant and intimate knowledge has to stop.

The ” mainstream” professionals must move beyond their ego of self and professed knowledge and start asking all of us …..  The carers, the families and those living through the movement’s of this terminal disease.

Companies “Re-Brand” all the time, well, let’s RE-BRAND this illness.  Instead of statements suffering, chose living well, start saying Functional Cognative Disorder instead of the usual damming alternative.

After you choose to care for your parent out of pure love, no matter the circumstance, because it all comes down to love; your life changes.  From your career, to your finances, your home, your children, your dreams and goals…. your concept of life.

At diagnosis, you are left alone , pushed into a life of publicly defined desolation. How would you deal with that?. There are no words.

Our, those diagnosed, our thoughts gravitate towards our families and the immense landslide about to launch. How do you talk about that? 

Who is listening.?

Perhaps a graduated approach to care?  I’m not a professional, I don’t make the charts.
BUT I CAN TELL YOu what the charts need to include. 

Without a doubt my knowledge, my daughter’s knowledge and the millions of people living with this diagnosis can provide you with everything you need. Build the business, if you will.

I wrote once about the statistics, it’s still ONE in THREE.  1 in 3.  Those statistics will only continue to narrow.

At this stage of progression, I am still able to perform most of the basic daily living skills .  But I cannot perform them completely or on a regular schedule.  I hope you see the scope of dispair associated with that. 

I am not here to sway you to one ideal of thinking, I am only asking you consider the collective message that has run through the blogs I have written.

I will never bandstand, but I will stay true to my beliefs and convictions, my opinions and real life stories.  I will thread each blog into an enormous book of stories with small, meaningful chapters. This is one chapter, a piece of the blanket.

There are layers and layers, it’s truly only not what you see.  Reach out.  Give a hug and a helping hand. Don’t ask what your friend caring for their parent needs, just drop off a homemade dinner or groceries.

Be kind, be good. Gain insight. Learn where to donate and how to truly support each other.

Thank you for reading this and staying connected, supporting me, it means alot.

I usually post a connective song, today I am posting something a bit different.  I asked my daughter if she may have a thought on a sing that would be condusive to the message I am sending, she gave me the below link.

Alicia Keys, her music has always ment so much to me, this interview and song has greatened my connection to her.  If you choose, start the video at 8:33, but the whole video is worth the watch.  The messages are incredibly moving.

Stay well my friends. Xo Jan

https://www.facebook.com/story.php?story_fbid=513517569200965&id=538649879867825