When Will It End?

The upside, the upside, the upside.... ?  Things look so grim for Dad lately that sometimes I forget to look for the upside.  Once I do, I find it immediately.  Having Dad so close is a definite upside. 

There is a noticeable change in Dad since he moved into the new home.  I've seen this before and it seems that he is over-medicated and the Director of Nursing agrees with me.  His face is taught, his jaw is locked open, his movement (if any) is extremely twitchy, and he can't speak.  It's heart-wrenching to see a loved one look like this.  He seems trapped.  I spent the last week trying to get to the bottom of it.  I talked with the nursing staff, I called his previous Doctor, I had the staff page his new doctor, and I had Dad's chart read to me at least three times.  Nothing points to over-medication (besides his physical state).  His meds are the same as they were at the Psych Ward.

Just to clarify, I'm not trying to make my Dad better.  We all know he has Alzheimer's, but quality of life is our main goal, and I'm not sure he has much while in this state.

This is what he looked like the day he moved in...

And here he is two days later...

I had a personal debate about whether to share this photo.  Ultimately, he looks rather peaceful, but you can still see the decline in two days time.

He has been that way for over a week now and most days he looks worse than that picture depicts.  After days of searching for a reason and not finding one, I was emotionally spent.  A few days later I had a meeting with the staff to review his care plan.  They now know that we don't want any life-saving measures taken, no feeding tubes, no pneumonia vaccine.... we only want him to be comfortable.  He isn't able to do much except lie there and twitch, so it comes as no surprise that he's not eating much either.  The nurse informed me that if this continues and his weight drops more, he will qualify for Palliative Care and/or Hospice sooner rather than later.

I made it through the meeting without crying, but as I sat by his bedside with my hand on his chest playing the song "Georgia" on my phone, the sobs poured out.  At this point, I don't care if it's the medication, I don't care if it's Alzheimer's, I don't care if the decline is from this most recent move... I just want my Dad to be at peace.  I can see fear in his eyes.  And I just want it to be over for him.  Watching him go through this is killing me.

This was the first time that I so strongly wanted my Dad to leave this world.  It was all I could think about.  It's the only solution.

The tears never really went away that day.  I cried on the way to a movie that Blake and I had been planning to see.  I cried in the car after the movie.  I cried in the parking lot when Blake was hugging me.  A profound sadness has invaded my soul and my body and it's not leaving any time soon. 

My Mom suggested I take a couple days off from visiting Dad since I had been there so much lately.  Probably a good idea.

The Rules of Skilled Nursing

So, I was worried about having to learn about MediCal now that Dad will be moving to a nursing facility.  What I should have been focusing on was the difference between Assisted Living/Alzheimer's homes vs. a Skilled Nursing Facility.  There are a lot more rules in these types of facilities...

For example, we just recently found out that Dad is not allowed to be on an anti-psychotic drug.  Since these drugs are really meant for patients with mental disorders like Schizophrenia or Bipolar Disorder, the skilled nursing homes cannot administer these drugs to Alzheimer's patients.  I don't know for sure if the problem is with anti-psychotic drugs or with drugs that have the federal black box warning on them, but it's basically the same thing.  (I understand the origin of these rules... the government is trying to stop the over-medicating of patients in nursing homes, which is a good thing.  But what about when someone really needs the drug?)

So our problem is that Dad is on Olanzapine (Zyprexa) which seems to be curbing his aggression really well.  The skilled nursing home that I toured the other day said they would just take him off the drug.  But, again... we have a problem.  Patients on these drugs need to be slowly weaned off in a controlled environment and then once that happens, doesn't that mean Dad would just become aggressive again?  And I think we know what will happen next.  He will be kicked out of the Nursing Home because they won't be able to handle him.

When I shared my revelations with the Doctor and Social Worker at the VA, they seemed surprised.  Needless to say, Dad isn't moving anywhere until we can get the medication figured out.  And the Social Worker assured me that if he was kicked out of the new home that they would just return him back to the psych ward.  So much flip-flopping around.  Poor Dad.

The only good news is, I really liked the home that I toured.  It's called Del Rio in the city of Bell Gardens and the facility has big outdoor spaces, wide hallways, and a clean appearance.  I kind of like that it backs up to the LA River too.  It seems appropriate since Dad is a genuine Angeleno.