How the Story Begins of the Little Sister Becoming the Caregiver

Don't plan for a storm while in the midst of it.   Levi Lesko

I think the best way to start how I became the sole full time caregiver for my parents is to share one of the most heart breaking events in my life.  This is still very emotional raw for me however it will help explain why so much unexpected trauma is not a time to realize you are not prepared when you have a family member with dementia..
My sister worked in the medical field most of her life... it was her life and she was a perfectionist. 
She cared for my very ill brother in law while working a fulltime just so they had insurance.
Even though she was working she had everything needed for him planned and time lined out for his day, nothing left to chance, whatever scenario that could come up was covered.

After he passed away she chose to retire to spend time to mourn Billy's death and take some time just for herself.   It was at that time we began to notice the decline of our parent's health.  I was working full time and still deeply grieving the death of my son, so Mary stepped right up and began to over seeing their medical needs.  She worked a part time job but caring for my parents was her fulltime job. 
Because of who she was I knew she had everything handled, detailed...sometimes overboard for my ADD mind however there was not a doubt she knew their Doctors, their diagnosis, their meds, the full pharmacy procedure of filling meds at Ft Gordon, She pretty much knew the names of everyone involved in their care and they knew her on a first name basis.  She was in complete control and she wasn't happy if things didn't go as planned.  She had a loving heart but she could be a bulldog if her plans were messed up or my parents weren't compliant with her
There were times that she would ask if I would take them to appts to free her up.  I began covering the days I was available to take them to the appts but I realized then that I could speak the same language as Mary.  She would usually sent me with a list of what she wanted covered and referrals she needed. 
She and I began having conversations about how we needed to coordinate our time so she could show me procedures and explain all that she had put in place.  It just never seemed to work out for us so we would just discuss issues at hand and  how best to fix them.  I have to admit I felt inadequate because Mary knew what she wanted or needed to happen, I was just the helper to make sure our parents followed the plan. 
During one of our nightly conversations, Mary was very frustrated and she said something to me that continues now to ring through my ears.  If something happens to me...You are screwed!!! 
As I write this today I can honestly say... She was right.
Soon after this conversation I could tell that Mary was wearing down.  I began to pick up more appts, doing evening checks on our parents and spending my days off with them.  I did this so Mary could take some time to herself so that didn't give us the needed time for her to share all she had in place or the procedures that needed to be followed.  Mary's health continued to decline with only getting a diagnoses of depression which would be normal for a fulltime care giver to 2 parents with Alzheimer's.   Mary continued to decline and was unable to leave her home.  I took over caring for our parents under her directions.  Mary would normally call my mother several times a day but She began having trouble talking for long periods and began texting me to relay messages.  She was now unable to make visits and had not been to see them for 5 weeks.  The doctors still assured her she was just worn down and depressed.  It was time for med refills at Ft Gordon and she forced herself to take me and show me the procedure.  I could not even focus on what she was showing me because I knew deep within me my sister was more than depressed, she was very sick and I was assured she had cancer.  My spirit told me but I wasn't bold enough to say the words to her.  Mary was very private and would accept nothing less than being in control and not show any kind of  weakness.  This is why she would not allow me to visit her and she declined me staying with her to help her out.  She said she would be fine, just care for our parents.
I regret my weakness and not insisting we get second opinions. 
On Sunday August 21,2106,  I got a desperate call from my sister saying she couldn't breath and was spitting up blood.  I immediately called for an ambulance and she was transported to nearest hospital.  It was on this day, what I already knew was confirmed.  My sister had lung cancer.  She was transported to University Hospital for further testing.  Mary being the fighter and warrior that she was insisted she would fight this and win. She could barley talk but her spirits were high and she made a point to talk to every person that came in her room and wanted to know everything about their lives and offered kind word to them all. After her biopsy she knew the diagnoses wasn't good however she still was chatting even when she had to write to us and assured us she was tougher than whatever the tests showed.  Several of us decided we would all be Team Mary Kicks Cancers Butt and we would all shave our heads and wear cute scarfs.  On Wednesday the diagnoses of Small Cell Carcinoma was given.  Our world was rocked.  The plan was to start Chemo immediately, before she could be transported, she went into A-Fib.  She was given medication and Chemo was canceled for the day.
On Thursday morning at 3:30 am, my daughter called to tell me Mary was unable to breath and her heart was unstable again so she was being moved to the  Intensive Cardio Unit.  She had been placed on a B-Pack and sedated.  I was able to talk to her and we shared our love for each other.  Her mouthing the words.  She asked me to take care of a few things for her and them I told her to just rest so she could get strong enough to start the chemo.  Looking back now, I wish I had kept talking with her. 
Within hours a nurse came in to let us know she would be moved to ICU because they could not get her stabilized and she would need more medication to relief the pain.  They informed us that she had stage 4 cancer that was continuing to spread though her body.  I still had hope because I know the God I serve and I knew my sister.
Once in ICU the family was asked to come back...When they pointed not to her room but to the family room... the traumatic memories of being taking into the family room when my son passed away over took my thought.  My head was in a daze and every option we were given was not one I wanted to accept.  Inside I was screaming, praying, crying, in denial and angry.  Mary's son made the decision that his mother would not want to be put on a ventilator and I agreed with him. 
I went to see her by myself and the oncologist to verify with her that the DNR she had she still agreed to.  He explained it meant going on a ventilator and she shook her head.  She mouthed a few more instructions to me and said... I love you... I said what she always said to me... I love you more... she squeezed my hand and closed her eyes. 
She was transported to Palliative Care in the hospital.  They had told us the plan was to medicate her enough where she would feel no pain and remove the B-Pack and she would slowly drift to sleep.  we called family members, and transported my parents to hospital to say goodbye.  That is not what happened.
When they took the B-Pack off, she set up grabbed mine and someone else's hand and hollered help. 
I was completely traumatized as were those sitting by her bed.  I felt her hand begging for help and on my other hand I could feel the hand of my son grabbing me and hollering help.  I got lost somewhere in that moment and I haven't returned yet.  I do know my mind wanted to believe she was still conscious enough that she still wanted to fight... she wasn't ready to go. 
I laid with her, I sang to her, I talked to her... I shared everything I could think I needed to tell her... but there was no change.   Through Friday, She would open her eyes periodically and acknowledge those in the room, mouthing, I love you or just reaching for a hand.  I had one last conversation with her, myself and the nurse.  She set up took her B-Pack off.  She really couldn't talk but she spoke with her hands until I figured out what she was telling me and then she just laid back down. 
Soon after, they changed her B-Pack to just an oxygen mask.  The family continued to talk with her, love on her, lay with her and every now and then squeeze a hand or lean her face on you when you spoke to her.

On Saturday, August 27,2016, less than one week from her diagnosis, with family and friends gather around her bed holding hands we watched as the angels came to take my sister to Heaven.  I felt the wings of angels all around.  I felt a hand on my shoulder and when I looked everyone was still holding hands and I knew my Justin was there to comfort me.
In that moment my heart broke, I began to grieve, my PTSD began to flair, my anxiety over took me and my agoraphobia was triggered...I was lost...I couldn't think and I could barely talk.  One thing for certain,,, the words of my sister was ringing in my ears,
You're Screwed.
I miss my sister greatly, she was the glue that kept our family together.
I pray frequently that God will allow Mary to guide me when making medical decisions.

Love you  more...Always

 
So this is how my story changed from Daughters of Alzheimer's to Daughter of Alzheimer
and how the little sister finds her way...