Wednesday, March 19, 2014

Dad is not an official statistic!

Shortly after Dad's death (like a day after), I already began wondering what his death certificate would say.  I guess you could say I became slightly obsessed and curious.  It's very important that Dad becomes a statistic of this horrible disease.  The mortuary guessed it would say Dementia of some sort.....

Here is what it says:

Cause of Death:  Cardiopulmonary Arrest  (immediate cause)
Then other "conditions leading to cause" are listed as:  Probable Myocardial Infarction & Coronary Artery Disease

Then listed below under "other significant conditions contributing to death but not resulting in the underlying cause":  Advanced Dementia; Hypertension.

I am insulted and incensed.  This doctor did not know my Dad but shouldn't his files have said something?!  Any and all of Dad's health problems are from Alzheimer's (or dementia).  He did have high blood pressure, but that's it.  Those heart issues, the fact that he was in a skilled nursing facility, his weight loss... all of it stems from Alzheimer's.  I believe that my Dad would have lived a long time if he did not have that disease.  He was physically very healthy.

So, when an article came out in the Washington Post two weeks ago stating that a new study ranks Alzheimer's as the 3rd leading cause of death after heart disease and cancer because of misleading death records, I believe it.  The article states that "death certificates for many with Alzheimer’s often list a more immediate reason for death, leading to a severe under-reporting of the disease as an underlying cause."  Click Here to read the entire article.  It's very enlightening and shocking.

I am still so mad about his death certificate.  I'm trying to let it go, but if I could get it changed, I would.  It frustrates me that Dad suffered so long from that disease but it's not going on record as the one and only thing that killed him.


2 Months Later

Frank Sinatra came onto my Pandora radio station the other day, and I realized it was the first time I had listened to "Fly Me to the Moon" since Dad died.  It's been two months and hearing that song made me smile.  (I have not listened to Ray Charles yet... )

The first month after Dad's death was a mixed bag of emotions.  We were extremely sad for the first couple of weeks... thoughts and realizations kept creeping into my head.  For example:  I remember one night crying in the bathroom and telling Blake "We just went through 4 years of insanity... doctor's appointments, moving Dad from home to home, bills, dealing with the VA, medications... so much energy and time went into all of that... and for what?  For him to just die?"  Obviously since there is no cure to Alzheimer's, we knew that was the end result, but everything that we fought for was only going to be temporary in the end.  The magnitude of this disease and what it means when a loved one is diagnosed is almost incomprehensible.  We could have never imagined we would go through what we did with my Dad.   

Then came the anger (which I know is normal).  The feeling that I was robbed from the chance of having a meaningful adult relationship with my Dad.  We were not that close growing up, but we were getting closer.  Alzheimer's stole that from me.  There was also anger because I felt that in some ways, I never knew who my Dad truly was.  He was 44 years old when he had me... he had a whole life before me and I want to know who that man was.  I saw the 'grumpy dad' or the 'silly dad' side growing up, but when his friends told stories about him at the memorial and about what a fun and energetic person he was to be around, I got jealous. 

The anger is long gone now, and I feel at peace.  Things feel normal around here, but I'm still fired up about fighting Alzheimer's.  A friend of mine recently contacted me because her Grandmother is aggressive (like Dad) and the home that she is currently in cannot handle her.  The Grandmother is on MediCal but does not qualify for skilled nursing.  Did you know that there are no Assisted Living/Memory Care Facilities that will accept MediCal in Orange County (only skilled nursing)?  It's pretty much like that throughout our state and probably many others.  We knew that already, but being faced with that stark reality makes it really tough for a family to make any kind of decision.  These are the cracks in the system.  And families dealing with Alzheimer's disease fall through those cracks. 

In a couple weeks, I will be in Washington D.C. attending the National Alzheimer's Advocacy Forum.  I imagine the week will be very powerful, emotional, and uplifting for me.  On my last day there, I will meet with my Representative in his D.C. office.  It's going to be an amazing experience and I can't wait.  Now I need to go buy a Power Suit!  :)

Megan texted me saying that Dad was in her dream the other night and that they were trying to buy a Los Angeles Rams t-shirt.  It's like he's sending her a wink and a smile from above.