Peace at Last

Dad was released from his 9 year battle with Alzheimer's yesterday.

He had a fever a few days prior, so Windsor ordered more extensive labs.  They wanted to send him to the hospital but unless it was going to make him more comfortable, I was against it.  I didn't hear back about the Lab results until Saturday.  It wasn't good.  Dad's sodium levels were critically high and his vitals were dropping.  His body was shutting down.

We called Megan and she booked flights right away.  In the meantime, the nursing staff was such a calm presence.  They made sure Dad was clean and they put lotion on his dry skin.  When my Mom said her goodbyes and left, he was tucked in comfortably with oxygen in his nose.  He looked serene.

A few hours later I was at LAX picking up Megan and her boyfriend, Erik -- we went straight to Windsor and even though it was after hours, we were able to see Dad.

He was breathing much harder and had a fever.  BUT, he knew someone was there!  And he knew someone was talking to him.  His eyes moved in Megan's direction and then back to me.  We reassured him "we're here Dad" "we love you" "hang in there".  Megan hadn't seem him in this condition, so it was even more upsetting for her.  Not easy for anyone, really.

The next morning, I woke a little before 7:00 with my mind focused on Dad.  As I got out of bed ten minutes later, the phone rang.  Dad passed away at 6:56 AM.  I almost feel like I was there with him when it happened... I am so glad that my thoughts were on him during his last moments here on earth.  Even though we were expecting this, its never easy to get that call.  Such sadness, relief, and more sadness.

Megan and I went to see him one last time.  We cried and held his hand.  His little heart tattoo reminds us of his sweet, sensitive, and playful side.

Dad, you were so brave to endure what you did.  You deserve to rest in peace now.  We love you and know we will see you again some day.  Watch over us now as we have done for you.

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.

Happy New HOME for Dad

Today is New Year's Eve and Dad has made it through another year in this life.  Half of his past year was spent in the Geriatric Psych Ward at the West Los Angeles VA Hospital, but as of a few days ago, Dad is now in a skilled nursing facility called Windsor Gardens Convalescent Center in North Long Beach.  3 miles from my house.

Many hiccups along the way prevented him from moving to a home sooner.  When I last wrote, we had found a place a couple months ago that would take Dad as long as he wasn't on anti-psychotic drugs.  The Psych Ward agreed to wean him off the meds to test his reaction, and as we can all guess, that didn't go well.  The aggression was back within days... he scratched a nurse in the face, shoved another nurse, and it took three staff members to bathe him one night because he was being so uncooperative.  Soon he was back on Zyprexa and doing much better, but now we had to look at another housing option.  

In the meantime, Dad's MediCal case worker called to say that his application was denied because he was already being taken care of by a government facility (the VA), so he didn't qualify for Long Term MediCal.  I understand the logic here, but it seems weird that they would deny MediCal to patients who are in a government hospital.  The hospital clearly isn't a long term solution or a home.  We eventually figured out that we would have to move Dad to a new home, and then immediately re-apply with his new address.

The Social Workers looked into more homes on their contracted list, but finally asked if they could start looking at options outside their list and jurisdiction.  I signed a release of information form, and within a week (two days after Christmas), I got a call saying they found a home and could discharge Dad that very day.  That was fast.  

I checked out the home an hour later.  It's clean, bright, and the staff seems attentive.  I gave the go-ahead to discharge Dad.  As far as payment goes, Dad's Medicare Part A will pay up to 90 days in a skilled nursing facility until the MediCal kicks in.  There are co-pays after the 20th day, but we will be reimbursed by MediCal retroactively.

Our favorite part was filling out the MediCal application again.  Ugh.  But it's in the mail, so now I can go celebrate the end of 2013 tonight.  Happy New Year to you all.

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.

Emotions Run High

The past few weeks, I find that I am either on the verge of tears when I think of Dad or just feeling depressed about him.  I actually went an entire week without crying, but then last night after mexican food and some tequila, the tears came again.  Note to self... tequila may not be the best medicine.  Anyway....

Dad's still in the Geriatric Psych Ward.  It's been three weeks.  And he still isn't walking. 

When I visited him the first week he was there, I finally felt optimistic that he could be diluted of some of those heavy medications and return to a more regular state.  He already seemed so focused and his personality was still there.  But, with every visit since then, he just seems to be declining... but not in an Alzheimer's way of declining, in a medicated way.  Yesterday he was twitching, mumbling and grunting, barely able to focus on me, and extremely drowsy. 

When I tell the staff that just three weeks ago Dad was walking and talking (or at least forming words if not sentences), dancing to music, and was able to hold a fork and feed himself... I feel like they don't believe me.  Since they didn't know my Dad before he was admitted in the psych ward, how would they know what his normal state is?  Of course they wouldn't believe that the man confined to a chair that I visited yesterday would be capable of all those actions.

On the other hand, I understand that we are trying to curb his aggression and I am so thankful that I am not the sole person in charge of his care.  (The VA accepted him as their responsibility ever since he moved into the VA home.)  But, let's say that my Dad lives another year, should he be condemned to this quality of life?  I mean, he really has no quality of life right now, but I think it's because of the meds not the disease at the moment.  Trust me, I know the reality of this disease.  I know that Dad will eventually forget how to walk, how to swallow, and he will lose his reflexes making the probability of choking on food a very real one.  He will eventually stop eating.  Many people believe that you can't die of Alzheimer's, you just die with Alzheimer's.  But my Dad is dying of Alzheimer's.  And it's a pretty shitty way of leaving this earth.  So, adding the medications to this already horrible disease frustrates me. 

(The doctor did inform us that she is trying to wean him off of the Depakote over the next few days to see if he will be able to walk again.)

We were also told that if Dad cannot regain the power to walk again, he will not be accepted back into the home.  They only want ambulatory patients.  So, the VA would help find him a skilled nursing facility that accepts MediCal near Long Beach where I live.  Most of these places (especially in Long Beach) are utterly depressing with four beds to a room and dark, dirty corridors.  Can things get any better for us and Dad?  Ugh.

The only positive thing to share right now is that we are going to start Dad on a Palliative Care plan.  We found his Advanced Directive where he stated he didn't want any life saving measures, and a Palliative Care Plan will help us achieve his wishes.  It focuses on providing relief from the symptoms, pain, and stress for patients with serious illnesses but will not prolong his life in any way.  A good example would be if he was to contract Pneumonia, we would then treat the pain and symptoms, but not the infection.  The Doctor thinks he is in some of the last stages of Alzheimer's.  She is giving us a very loose timeline of about a year.

So, with all this information swirling around in my head, I'm sure you can understand why emotions are running high. 

Also, in the past few weeks, we have been receiving so much support from readers and family and friends who relate to our story and are battling the same type of situations with their loved ones.  We so appreciate you reaching out.  It's very comforting to know we're not the only ones.