To Blake... the Best Dad I Know

With less than a month to go before baby boy Hardin arrives, I feel compelled to share a few thoughts about the best father I know - my husband, Blake.

Now that both our Dads are gone, Blake is the only father figure in our kids' lives and of course the actual Father.  Our Dads made a lot of mistakes (let's face it, no one's perfect), but the good news is, we turned out all right, life goes on, and we get to learn valuable life lessons from those men.  Blake gets to be the kind of Dad that mine never was and he gets to follow through like his never did.

Many would say that's a lot of pressure on someone. Not for Blake. He was born to be a Dad and I think he would tell you it's the best and most important job he's ever had and will ever have.

I love how our children come first in his life. How every night when he comes home, he drops everything and tosses Emry in the air. They embrace and kiss and embrace and kiss again, and then she sits there cheek-to-cheek with him, a huge smile on her face, and an iron grip around his neck.  Eventually she leads him off down the hallway to go find the cat.  He would even eat dinner with her in his lap if I didn't say that she needs to understand some boundaries.  I love that he asks her what she dreams about each morning as he goes into bed to cuddle with her.  (These days she dreams about coins).  And how he has already instilled in her a love for numbers - she counts up and counts down and even adds fingers together.

In less than a month our baby boy will be here and he couldn't be more lucky to have Blake as his Dad.  They will have a loving relationship, they will respect each other, our boy will look up to him, and Blake will be proud of him. Whether our child decides to play drums in the school band, join the debate team, play American football, or best-case scenario, become a kick-ass soccer player (real futbol!), I know his Dad will be the first to support him.

And here's the kicker:  Blake won't really realize it but by being an amazing Dad and most importantly an amazing husband, he will be giving our son the greatest gift. Our son will know what it is to be a good man.  And that's the simple truth right there.  The best part?  I get to be a part of it all.

Three weeks from now is Valentine's Day and there's a very good chance we will be in the hospital meeting our little boy. So, I would like to say Happy Valentine's Day to my husband Blake. Thank you for picking me, for always doing your best, and for giving me such happiness. Our family is blessed to have you.

I can't wait to meet our Son!

How to Heal, But Not Forget

I believe there is a fine line between healing after the loss of a loved one, but also not forgetting the struggle and pain that your loved one endured.  I never want to forget what my Dad (and my family) went through during the last 4 years of his life.  Because to me, forgetting is the equivalent of thinking that it's not important anymore.  But, on the other hand, it's also imperative and healthy to move on with life and let go of the pain in your heart.

Most of the time I don't feel the pain anymore.  Yesterday I did.  There's an article circulating on every social media website, People.com, CNN.com... you name it, the article is there.  It's about a 29 year old woman who is choosing to die on her own terms.  She has terminal, aggressive brain cancer. (I'm not doing her story justice, you must read it).  She moved to Oregon where she was able to have a prescription for a drug that will help her die when the time comes.  She talks about the importance of quality of life, living life, not being in pain, talking with loved ones and spending time with them.  She does not have Alzheimer's but the nature of her disease is similar because her brain will go first and then her body will hang on a little longer.  See the parallels to my Dad's story?

This is obviously a sensitive subject and I am not here to talk about 'assisted suicide'.  I'm simply pointing out her story because my Dad had a very poor quality of life for the last 6 months before he died.  It hit me really hard today after reading her article.  I stood in the shower and really cried.  I hate Alzheimer's disease and every thing that it did to my Dad.  He had Scabies more times than we can count, he had a broken nose from trying to run away from a care-giver which resulted in a face-on collision with a door, he had MRSA - that nasty staph infection that had to be lanced open by the doctor and drained, he had a hernia that we could not treat because how do you perform surgery on an Alzheimer's patient?, he was on strong anti-psychotic medications that eventually resulted in his loss of mobility, appetite, and sped up his impending death.  I was begging the heavens near the end to please let him die.  He had almost no dignity left and no quality of life.  I now have to live with the memory of how he lived, where he lived, and how he looked toward the end of his life.  He didn't get the chance to say goodbye because he could not talk and he couldn't focus on us when we visited.  I know he would have wanted to die a different death.

So, I choose not to forget because it would kill me if someone else I loved had to go through what my Dad went through.  The future is unknown, but Alzheimer's statistics are not on our side, so it's likely I will have a run-in with the disease again.

I try to believe that our story must be more severe and more heart-breaking than many (not all) of the Alzheimer's stories out there because there are over 5 million Americans living with Alzheimer's disease, and if they all had stories like ours, then they would all be standing on rooftops and yelling for something to be done about this disease.  Right?  But, they aren't.

I just wish more people cared about Alzheimer's.

The Long Beach Alzheimer's Walk is less than two weeks away.  We are fund-raising and spreading awareness as we always do.  If we reach our team goal of $7000 for this walk, then we will have raised a total of $25,000 in the past 5 years for Alzheimer's.  That's an accomplishment.  We're determined to walk to change the future.

Persistence Pervails!

I had persistently been visiting Dad's Doctor's office over the past two months hoping to speak with the Doctor about changing the cause of death on Dad's death certificate.  (Luckily for me, the office is within walking distance to my house.)  The Doctor finally called me about a month ago and I explained briefly over the phone what I was hoping for.  His answer was, "Well, I can't do that.  How do I know he died from Alzheimer's?"  And I responded, "I understand.  That is why I have compiled a folder of information that includes some medical records and a recent CT scan..."  He gave me the go-ahead to drop it off at his office.

Weeks went by and every time I stopped by, the office manager would shake her head.  The Doctor hadn't looked at the information yet.  In the meantime, I emailed the administrator, who happens to be his brother, urging him to put pressure on the Dr. to consider my request.  I never got a response.

A couple weeks went by, we were busy, and I kept forgetting to check in with the office.  Finally I went by on Friday, and there was good news!  He approved the change, but forgot to sign the actual paper so that it could be faxed to the mortuary.  We were in the home stretch, but I didn't want to celebrate yet.  Then, yesterday I got the call that everything was signed and that the fax was being sent.  It's sort of anti-climactic, but I know it was the right thing to do for my Dad and for the cause. 
I took a picture of the Doctor's corrections....

It will now say that he died of Cardiopulmonary Arrest but right under that (the underlying cause) will be Advanced Alzheimer's Dementia.  That should make him a statistic. 

First Request - Denied

The Mortuary called me last Tuesday morning, as planned, with the news that the Doctor refused their request to have the cause of death changed.  Her words were, "You were right.  He didn't want to change the cause of death."  She was surprised and she said he gave no reason.  

Unfortunately because she gave me a glimmer of hope, I became quite upset that day.  I was fired up and so many thoughts were swirling in my brain.  It took some princess music and hugs with Emry to finally calm me down.  The next day, I drove to the West Los Angeles VA Hospital to request a copy of my Dad's medical records.  Those will take about 10 business days to arrive in the mail.  Today is day 6.  I sat down and wrote my cover letter for the Doctor because I had to get all the information out of my brain.  I was going crazy.  My plan is to turn in that letter with a "packet of proof" to the Doctor so that he can be fully informed.  Hopefully I will be able to meet with him or speak with him on the phone.  

In the meantime, I went through all of my Dad's care plans and doctor's assessments for all the homes he lived in and all the hospitals he stayed at.  I currently have 3 different Doctors from 3 different facilities that have stated his diagnoses as Alzheimer's, Dementia, or Dementia Psychosis.  These papers do not prove that he died from Alzheimer's, but they do prove that he was on powerful drugs for years because of Alzheimer's.  Those drugs combined with the disease are what truly killed my Dad.  

I am hoping to find something from the Palliative Care Team at the VA hospital as well.  I believe a patient can only be put on Palliative Care if they have a terminal disease.  I think that would be very convincing.

While all this was happening, I planted a small garden in the back yard.  I am scared to grow vegetables and especially herbs because they always die.  I do not have the passion my Dad had for the earth.  He was out there every day tending to his garden.  So, I started small... 2 Tomato Plants, Basil, Squash, and Pumpkin.  Emry says to me often, "Look at my garden, Mama."  Maybe she will have Dad's green thumb.

Changing the Cause of Death...

The cause of death on Dad's death certificate is still bothering me.  It's actually doing more than that... it brings me to tears of frustration and hurt every time I think about it.  I really thought I could let it go, but it crushes me to know that he suffered from this terrible disease for over 9 years and he is technically not a statistic.  All the hard work we do to make a difference and to find an eventual end to this disease is all because of him and for the millions of families dealing with this disease every day.
When I was in D.C., a friend of mine and fellow Alzheimer's Advocate shared with me that she is fighting to have her Mother's cause of death changed.  I had already come to tears that day thinking about it and felt that it was consuming me because there was nothing I could do.  She has changed my thinking and has offered to help me.  
She sent so many resources to her Mother's Doctor including a link to death statistical data tables from California Dept of Public Health proving that Alzheimer's Disease IS a cause of death and an article similar to the one I shared a few blog posts ago that stated Alzheimer's kills more people than previously thought because the disease is under-reported as cause of death.
I feel like I need to prepare for my day in court in order to convince this doctor, who doesn't even know me or my Dad, to change the cause of death.  

First on my list was to call the Mortuary because they will need to be involved at some point.  The woman was extremely helpful and didn't seem to think I would get much push-back from the Doctor (it sounds like people request changes on the death certificates often and that this specific doctor will usually amend it).  She actually says that many people request that Dementia be REMOVED from the cause of death!  I can't believe that.  The stigma of Alzheimer's still exists.  Birth and Death records are pretty powerful, I guess.  They become History.  They are always the first thing you find when you dig into your ancestry. 

Our plan is this:  She put in the request today and will hear back by Monday or Tuesday, but will call me Tuesday no matter what.  Could it really be this simple?  I don't know....

If that doesn't work, I found out that the Doctor's office is 1/4 mile from my house, so I can always stage a sit-in.  Just kidding... sort of.  Let me just put it this way... I plan to be persistent on the matter.

Alzheimer's Association Advocacy Forum in D.C.

My Trip to D.C. was everything I hoped it would be and more.  The first two days were spent 'training' for our final day on Capitol Hill.  There was an Advocate or Ambassador from all 50 states and in the case of more populated ones like California, there were even more.  I think our chapter (greater LA area) brought 23 people .  Total there were almost 1000 people there.  Two women in our group just lost their mother to the disease and then there were others who were personally battling the disease themselves.  We met a Father, age 51, who was diagnosed at age 47 with early on-set Alzheimer's.  His 18 year-old son and wife were with him and this was their 3rd year participating in the Forum. 

The emphasis this year was how we desperately need more support and funding from the Government to combat this disease.  Our collateral very clearly points out how Alzheimer's is helping to bankrupt our country -- the graphs and charts say it all.   We presented this collateral to our Congressman or Staff members, walked them through the handout, and then someone would share a personal story (I shared my story in all three meetings because it was the most powerful out of our group) and then we would ASK for what we need.  My spiel went something like this:

If there is one thing that you take away from this meeting today it's this:  Alzheimer's is the most expensive disease in the country with costs set to skyrocket in the years ahead.  Most of those costs are from Medicare and Medicaid.  1 in every 5 Medicare dollars is spent on someone with Alzheimer's.  
This year the disease will cost us $214 Billion with $150 Billion coming from Medicare and Medicaid.  Only 0.25% (a quarter of 1%) is currently committed to research.  That 0.25% is the ONLY way to reduce the costs.  
The Director of the National Institute of Health, Dr. Francis Collins, testified before the Senate Appropriations Committee in February and said "We are not, at the moment, limited by ideas. We are not limited by scientific opportunities.  We are not limited by talent.  We are, unfortunately, limited by resources to be able to move this enterprise forward at the pace that it could take."  
The good news is we know that smart government investments in research do work, for example, Cancer, HIV/AIDS, Cardiovascular...  We need that kind of investment to bring the costs of this disease down and to find a way to prevent, slow and cure Alzheimer's. 
(I then shared my story, especially how stressful the financial impact was on our family and then brought it back around to our ASK)
What we are asking for today is $200 million in funding for Alzheimer's research in Fiscal Year 2015.  Will you sign and send a letter to the Appropriations Committee supporting this?  (we got a yes in two meetings and a probably in the third meeting).

Our second ask is this:  in 2010 the National Alzheimer's Project Act (NAPA) was passed and in that Act there are timelines and milestones of how we are going to beat this disease with a goal of effectively treating and preventing Alzheimer's by 2025.  HOWEVER, the plan does not include a projection of the level of funding necessary to reach this goal.  Last week, the Alzheimer's Accountability Act was introduced which would require the scientists at the National Institute of Health to submit an annual Alzheimer's research budget proposal directly to Congress and the President.  This will inform Congress of what is needed to reach our goal of 2025 so that they can make an educated decision when deciding how much funding goes toward Alzheimer's research each year.  Will you be a Co-Sponsor of this bill?  (again we got a yes in two meetings and a probably in our third meeting.)

It sounds like a lot of overwhelming information but we were trained so well and the collateral was put together so precisely.  Our presentations were very clear and we didn't get a lot of clarifying questions.

The next 24 hours were spent exploring D.C.  The city is so clean, so safe, and so inspiring.  I can't wait to go back with Blake and Emry some day.

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.

My Final Words to Dad

Yesterday was truly a special Day.  We held Dad's Memorial in my backyard and we had over 40 people come to celebrate his life.  It was perfect for Dad.  We ordered beer Koozies and drank Coors Light while munching on Peanuts in the shell.  Pictures and Flowers were everywhere, and we served BBQ Ribs, Fried Chicken, Coleslaw, Gravy and Mashed Potatoes, Cornbread and Bisquits, and BBQ beans.  We were so touched to see everyone there.  Alzheimer's is a very lonely disease since the nature of the disease makes the individual forget who everyone is and therefore lose contact with friends and family.  We tried our hardest to stay in contact with people and this blog helped tremendously.  So, I extend a huge thank you to everyone who attended and/or sent flowers.  It meant so much to us.  It was an amazing party for Dad.

Here are the words I shared at the Memorial:

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When I look back on Dad's life... it's interesting.  Life handed Dad a lot of lemons. But he still managed to make lemonade.  He has four children - I know we didn't turn out too bad - we cared for him until the day he died.  And I know my sister Kelly who lives in Oregon would love to be here and is taking it pretty hard.  She sent beautiful flowers.  His lemonade also included numerous trips with friends and family to go fishing, camping, hunting and so on. He was a hard worker and a loyal worker throughout his years at UPS and Wal-Mart.  But many of Dad's life-lemons were very bitter... an unstable childhood, three marriages, estrangement from close family members, back injuries that forced him to stop working at a job he loved (UPS), and lastly the worst lemon of all, Alzheimer's.  He dealt with them in many ways, but perhaps the best way he coped was through his playful personality... and he had A LOT of personality.  He had an awesome laugh and always wanted to make people laugh.  He was that way until the end.  When he was confused or couldn't think of the correct word, he made a joke.  He. Was. Funny!  And he never hesitated to tell a joke around us even if it was inappropriate or dirty.  All we could say was "Daaaaad!!!" and try to ignore it.  As teenage girls, I think we had our fair share of embarrassing moments around him.  But that was who he was.  He showed us his true colors always.  I will also add how he shamelessly flirted with women, waitresses, store clerks, cashiers... right in front of us.  Sometimes he whistled across the parking lot or out the car window.  Megan and I would start slouching in our seats while rolling the window up as fast as we could.  He loved women.  And it was embarrassing!  He also had a collection of shirts and hats that said various things like, "Who are all these kids, and what do you they want from me."  or "FBI, female body inspector" or "stop your grinnin and drop your linen". 

The passion he had for the things he loved was and is so inspirational:  Fishing, Music, Dancing, The Dodgers, Cooking, Gardening, Hunting. 

When I think of Dad before Alzheimer's, so many things come to mind.  I think a lot about the connection he had with the earth around him.  He grew anything and everything... and then he cooked it too.  We had chickens, pheasants, avocado trees, citrus trees, an apple tree, bonzai trees and sago palms, a compost pile and a HUGE garden with countless vegetables.  What a beautiful way to grow up.  He exposed us to all of that.  He was "green" before "green" became cool. 

There was always something cooking on the stove... Goulash, Beans, Soup (oh man, his turkey and rice soup!), his home-made teriyaki sauce!, and we ate a lot of ribs growing up as well... and that's one reason we're serving them today.  And I could eat buckets of the fresh fish that he would come home with after a fishing trip.  I used to watch him filet the fish on a wood block in the garage and Megan used to wrap them up in towels and carry them around like babydolls.  Oh, and the old refrigerator that he turned into a smoker... he smoked his own fish!  It was amazing.  Every Saturday morning we would have a big breakfast of bacon, eggs, toast, and potatoes.  The house smelled so good.  Oh, and I can't forget french toast on Christmas morning.  I only wish I would have retrieved some of those recipes or special ingredients long ago when he was capable of passing them on to me.

I have so many picture memories of my Dad in my head.  I've been trying all week to retrieve them, but the last few years seem to be getting in the way.  I can picture him in white short corduroy shorts, tube socks, no shirt, a beer in hand tinkering in the backyard with the dodger game on the radio.  Or sometimes he would be in the garage with music playing.  I also picture him in his sweatpants, uggs, and flannel button-up reading the newspaper every morning with a cup of coffee sitting next to him.

He was at every activity that Megan and I were a part of growing up:  Tennis, Basketball, Plays, Concerts, Homecoming.  He was always there and always reliable and I know he was so proud of us.  And as we got older, Dad grew sweeter... it's almost like he knew he wouldn't have much longer with us.

Dad's love of music and dancing stayed with him until the very end.  It didn't matter what kind of day he was having, the music would have the needed affect on him.  It would calm him or uplift him.  I was always surprised how the words to the songs stayed with him even when he was barely talking.  Those moments are my treasured moments with Dad.  I'll never be able to listen to Frank Sinatra or Ray Charles without thinking of him.  Especially the song "Georgia on My Mind".  The day before he died, I held my phone up his ear and played it for him one last time.  I think it made him feel less scared and at home with himself. 

Lastly I would like to share how Dad enriched our lives.  We had to step up to the plate and advocate for him.  Megan and I became closer to Dad than we had ever been and our love for each other grew stronger.  As Alzheimer's descended into his life, we kept laughing, we kept dancing, we kept singing.  We cried too, but got back up.  Dad gave us a purpose.  Megan and I will not stop fighting Alzheimer's until there's a cure.  No one deserves to endure what Dad had to go through.  And I think that's what I'm grieving about more than anything, because honestly we lost Dad a while ago, but watching him the past few years was really hard.  He also showed us how important family is.  It's the most important.  So, I'd like to say to Dad...  You were so brave, you did the best you could always, you were loved and cared for, you touched so many peoples' lives, you could make anyone smile and laugh.... so now I ask that you watch over Megan and me as we did for you.  We love you so much. 

Pictures Last Forever

Gardening, The Dodgers, Dancing

 Fishing Trip with Dad (poor Megan was sea-sick and I had braces!), At a wedding with Dad.

 Fishing

Bowling 1962, age 23

Being a goofball and cracking himself up along with everyone else

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.

We Walk the Walk

Long Beach's 3rd annual 'Walk to End Alzheimer's' was a huge success.  As the co-chair for the walk, I can announce that the walk exceeded all it's goals, attendance grew enormously, and we even had Congressman Alan Lowenthal share a few words about his dedication to this cause. 

On a personal note, our team surpassed our goal from last year and ended up raising $6165.00!!!  Even more amazing is that our team consisted of 20 people this year!  Thank you to everyone who came out to walk with us and support this important cause.  I can't tell you how much it means to my family.  I actually stood at the finish line with tears in my eyes as I watched all the walkers because I could feel how blessed we are to have the support and love of our friends and family.

Below is a picture of our wonderful team... I don't think we got a picture with all 20 of us, but this will do.  Oh, and a picture of me with the Congressman. 

Closure

My news today isn't good, but it's also not shocking.  My Mom and I had a meeting yesterday at the VA home to fight for my Dad's place in the home.  In my opinion, the Doctor's mind was already made up and there was nothing we could have said or done to change it.  He will not be returning to the VA home that I once called his 'final resting place'. 

I'm already exhausted when I think of describing every little nuance of the hour long meeting yesterday, so I will just touch on the key points.  The doctor stated that my Dad's aggression hasn't diminished and that he is still a threat to others.  I have been getting almost the exact opposite report from the Psych Unit the last 6 weeks.  Dad practically sleeps half the day now, he can't walk, and he is very calm and relaxed.  So, who is telling the truth?  Even worse though, the Doctor said that their particular Alzheimer's facility is not equipped to handle residents like my Dad.  He is too aggressive, too advanced in the disease, too difficult to manage... basically he has advanced Alzheimer's.  What were they expecting?  What will happen to all the other residents when they reach that point?  Will they get removed from the home as well?  You can't call yourselves an Alzheimer's facility if you only want the timid, old, and moderate-stage patients.  It doesn't work that way with this disease.  It's extremely unpredictable and can take a turn to looney-toon town with the drop of a hat.  Plus, there is currently no way to prevent, slow, or cure Alzheimer's.  Therefore, none of these patients are getting better... they are all getting worse. 

Apparently they have discharged 7-8 other patients in addition to my Dad.

Pathetic.  Pathetic.  Pathetic.
Pathetic excuses.  Pathetic attempt at proper care for an Alzheimer's patient.  Pathetic thing to do to a veteran.

So, we said our peace and we have some closure.  Not much closure, but enough so we can move on to tackle the new and unknown.  Mom and I finished Dad's Medi-Cal application last night and I just dropped it in the mail.  The VA will graciously help place my Dad in a 'VA approved' skilled nursing facility and will pay for the first 30 days until Medi-Cal kicks in to supplement Dad's monthly housing payments. 

Time to start touring homes again.






 

It's Unfair!

I sit here with salty tear stains on my cheeks and I just want to scream.  I know life isn't fair and I know life never really gave my Dad a break, but sometimes I just want to scream, "It isn't FAIR!"

A few weeks ago, the staff at the Psych Ward started talking to us about his discharge.  It was pretty evident that the VA home was not going to re-accept him, and I was pretty calm about it.  (We always knew that was a strong possibility.)  My mom on the other hand was fuming over the phone every time we talked about it.  I honestly felt overwhelmed... I didn't have the time or energy to fight this.  It takes time to drive to West LA... and babysitters cost money... and getting the right person on the phone is almost impossible... and when I do talk to the right person, I never get a straight answer... and let's not forget that I have my own life!

What imploded my attitude of 'calm acceptance' was the arrival of Dad's MediCal application.  Since he has no money, Dad will need to apply for MediCal and that will pay for his new home.  I spent the last 3-4 years getting to know the ins and outs of the VA system.  We waited 2 1/2 years to get Dad in the VA home.  We planned and we were organized, and now we have to start all over with a new system I know nothing about.

Well, Mom, now both of us are fuming (or crying and screaming). 

Talking this morning, we feel that we need to exhaust every resource to keep him in the VA home. We don't feel comfortable with anything less.  I just got off the phone with two VA Social Workers.  I managed to keep it together when I spoke to the Social Worker from the home, and he was receptive to having the Doctor look back over Dad's file now that he seems to be less aggressive.  The second Social Worker basically just listened to my concerns and then told me to fill out the MediCal form asap.  That's when I started crying on the phone.  I really tried to keep it together, but no such luck.

The bottom line is this:  Dad has Alzheimer's.  All of his behavioral issues and motor functions are affected by Alzheimer's.  So, for the VA ALZHEIMER'S home to kick Dad out because he is aggressive or because he lost the ability to walk and has a restraint around his stomach keeping him from falling out of his chair -- is UNFAIR.  It's all a part of Alzheimer's.  And that is why we are fuming.

On another note, we are once again participating in The Long Beach Walk to End Alzheimer's.  And team "UpsidetoDementia" is fired up!  Click on the link to learn more, to register, or to donate to end this disease!  Kristen's Walk Page

Rudolph

Upon visiting my Dad yesterday, I noticed that his nose was unusually red and large.  When I called the nurse over, she said in a nonchalant manner, "Oh yeah, I just noticed that today".  Okay, and... ?

After explaining my concern, she promptly paged the doctor to come take a look at it.  Since Dad has had three Staph infections in the past year, I am worried that although the nose may seem like a strange place to get one, that may be what it is.  (I actually know someone that had a staph infection in his nose and it wasn't pretty).  I left before the Doctor arrived, so I'm sure they will call me if it's anything serious, but I couldn't help humming Rudolph the Red-Nosed Reindeer as I got in my car to leave.

Dad has now been in the Psych Ward for 5 1/2 weeks and it's been 6 whole weeks since he was admitted to the hospital.  I visit him twice a week, and Megan was able to see him while she was here last week visiting.  He still isn't walking, but he's much more stable on the medicine.  He is completely off the Depakote and is only taking Olanzapine.  There have been a couple incidents of aggression or agitation (he ripped a nurse's uniform pocket the other day when she was trying to help him) but for the most part, he has calmed down quite a bit.

As far as his future goes, I have no idea what will happen.  For now, he's in the Psych Ward and they aren't rushing him out of there.  He may have to go to a skilled nursing facility after, or he could be admitted back into the Veterans home.  It changes every day, so I'm not worrying about it until they tell me it's time for his discharge. 

The Upside to Scabies

Turns out there is an upside to Dad having Scabies (for the 10th time!).  It's such a contagious little creeper, that Dad has been assigned his own room at the Psych Ward to quarantine him from the other patients while he finishes the scabies treatment.  Now how about that?!

My Mom and I visited him yesterday and he was peacefully taking a post-lunch nap in his little bed next to his large window in his private room.  Both of his hands were resting on his chest and he was breathing deeply.  He was peaceful.  It feels good to say that.  A welcomed and much appreciated word after the last few weeks. 

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.