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.

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. 

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.

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. 

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.

My Dad's Brain

I know how blessed and lucky we are that Dad was admitted into the West Los Angeles VA home.  But, I am reminded again today as I sit on the phone with his Doctor.  

Dad was taken to the ER yesterday because his behavior has become dangerous.  In the last few weeks, I have been receiving more calls about altercations with another resident or caregiver.... scratching or hitting or even falling down.  I witnessed it a bit earlier this week when I went to visit and he was running away from the caregivers who were trying to help him change.  When they got too close, he pushed one of them and lashed out at another (thankfully missing her).

Yesterday escalated even more as he began brandishing silverware.  They decided to take him to the ER.  His behavior and mood didn't improve over night, so that's when they decided to admit him for further evaluation.  

We are LUCKY and BLESSED because other homes are so quick to give up on my Dad.  He has been kicked out before and it was heart-wrenching.  I understand, because why would anyone want a resident who has violent outbursts that endanger other people.  But, since we're dealing with a Government Agency that cares for Veterans, every step and precaution is being taken to see that he gets the best care.  They aren't giving up on him.  And it's unlikely that he'll be kicked out.  Because then where would he go?

Alzheimer's is such a tricky disease.  The Doctor even said, "We actually know quite a bit about the disease, but every person is different, and the disease proves to be very unpredictable."  They also did a CT scan and everything looked normal EXCEPT for the very noticeable shrinkage of my Dad's brain. 

As I've mentioned before, www.alz.org has an amazing Brain Tour that shows the effects of Alzheimer's on the brain.  Click here to visit the tour.  Here is just a glimpse of what my Dad's brain probably looks like.  Pretty Shocking...

Our Poor Dad.  

For now, it looks like he spending the weekend in the hospital.  More updates to come...

Moo, Neigh, and Gobble Gobble

As a child, we loved listening to my Dad make animal sounds.  They always sounded more like an animal and less like a human-produced sound.  He was that good at it.  My favorites were Moo, Neigh, and Gobble Gobble.

Luckily for Emry, I got two of them on video today.  Although, as Megan pointed out when I texted her the video, the Moo does kind of sound like the cow is either dying or giving birth. But hey, this is an Alzheimer's patient we're talking about, so the fact that he did it at all is pretty amazing.

(How cute are they?!)

My visit with Dad today was necessary since I had not been there in a couple weeks (June was insanely busy) . The staff called me yesterday to inform me that Dad had been striking out at caregivers and had scratched another resident in the face.  I never know what triggers his erratic behaviors, but I have a feeling that through the fog of Alzheimer's, on some level, he misses seeing a familiar face (namely mine) and could be feeling a bit abandoned.  Oops. 

We had a great time together and Dad was all smiles.  I talked to the staff, and they are adjusting his medicine so that it will be administered 3 times a day (in a smaller dose) instead of the previous once a day.  Good plan.

Lastly, at 16 months old, Emry is now saying Bye Bye.  Sometimes it's Bye Bye Kitty or Daddy.  But, today it was "Bye Bye Gappa." 

Makes your heart melt, doesn't it? 

So, without further ado... Here are some animal sound videos! 

A Positive that's actually Negative....

"You don't want to make anything easy for me... do you, Dad?"  Dad slowly turns his head, looks at me, and giggles.  Evil!  :)  At that moment, I had both my children in the car... Dad and baby Emry.  It was a juggling act, but I survived.

There has been a new development in the Alzheimer's Soap Opera that we live in.  The VA facility that Dad was accepted into called to ask for a TB test because they are hoping to open "in the next month."  (whatever that means...?)  But good news anyhow.  So, I took Dad to get a test.

When I picked him up two days later to get the test read, the staff at Valley View Gardens was convinced he had a new abscess on his arm, but once I once I looked at it, I knew it was his TB test.  Dad was going to test positive.  

When I brought him to the Doctor's office, they confirmed my suspicion.  So, we have to go back on Monday for chest x-rays.  Dad tested positive last time he got the test, and they informed me that once someone tests positive, then they will always test positive.  So, apparently, we could have gone straight to the x-rays and skipped the whole test... That would have saved a couple trips, but now we know.

What we are worried about though, is what this means for his move-in date for his new home.  We're just hoping this doesn't delay things.  He most likely has latent Tuberculosis, which just means that he was exposed to it once, but doesn't have it.  Cross your fingers for good x-rays!

Success Indeed!!!

We would like to share the good news!!!  Dad was accepted into the West Los Angeles VA Memory Care facility!  Three business days after his assessment, we received the letter in the mail!  I couldn't believe it!  It just seemed so simple and matter-of-fact.  After this entire process, we're so happy to have some stability for Dad's future.

Now if only they would announce the opening date of the facility.

Success... in my opinion!

After my last blog, I think everyone was nervous for our Assessment at the new VA home in West Los Angeles, but I'll get right to the point... THE DAY WENT VERY WELL!  Success!... in my opinion at least.

The facility is big, clean, and brand new with wide hallways and delicious food.  Despite terrible traffic on numerous freeways, we arrived just a few minutes late and were able to get a bite to eat with some of the assisted living folks.  I got shrimp cocktail, Dad got cod with rice and veggies, and we finished off with chocolate covered bananas and strawberries!  Wow!  Oh, and Dad was eager to eat everything on his plate, so he grabbed a slice of lemon and ate it like a slice of orange.  When I looked up and saw the look on his face, I knew immediately what he had done.  Then he pointed to the lemon and stated that it was "spicy... watch out".  Hahahaha.

Our "tour" really just consisted of visiting one of the rooms.  The rooms are designed for roommates, but there is a wall down the middle of the room, so each resident has their own private area, tv, shelves and cupboards... they only share a very large closet and bathroom.  The room we saw actually had a distant ocean view.  Apparently The Memory Care area where my Dad would be living is on the 3rd floor but has a couple terraces so that the residents can spend time outside.  

I was most worried about how the staff would approach Dad and how he would react.  After dealing with his current home, which is supposed to be well trained in handling Alzheimer's patients, but clearly is not, I don't trust anyone.  Well, I had nothing to worry about... because it appears that they know what they are doing there!  What a relief.  The Social Worker walked right up to Dad, spoke loud and clear, shook his hand and Dad was delighted.  He even patted the guy on the shoulder while shaking his hand.  They spoke privately in a room for about 4-5 minutes and then I was allowed to join them.  After speaking with us for a while, it almost seemed that the Social Worker was watching us with a slight sadness in his eyes at our situation.  He was seeing a 72 year old man with moderate/advanced Alzheimer's sitting with his 28 year old daughter... both in good spirits, but both obviously dealing with a very frustrating disease.

Basically the same thing happened when we saw the Nurse and the Doctor.  Dad handled all of it really well, and I answered all the questions once they realized he couldn't.  

It really felt like the staff was approaching my Dad's application in the manner of 'when he gets accepted, not if', so we left with high spirits.  The only bad news, is that it could still be 3 months before the facility opens, but we're hoping it's sooner than that.

Below is a picture of us celebrating that the day went well.  

And of course, as promised... a picture of Dad with his Grand-daughter Emry!

Assessment

We have some movement in Dad's ongoing future housing/financial prospects.  As I reported a couple of months ago, we had completed his application to a Veterans Association facility for Alzheimer's Patients and were waiting for the next step.  That next step is today.  The Assessment.

Dad's appointment is at 12:15 today at the new facility and will start with a tour and then end with an assessment by 3-4 different people.  We're all a little worried.  If you count from when we pick him up at Valley View Gardens to when we drop him off... this is shaping up to be a 6 hour excursion for my Dad.  (A 2 hour excursion is pushing it for someone at my Dad's level.)

The biggest worry is that the letter we received in the mail states "The assessment portion will begin at 1:00... and should be completed by 3:15.... The assessment includes sharing information with a physician, registered nurse, and social worker individually." And apparently I'm not allowed in the room with him.  Um, Hello?  What kind of answers or conversation do they think they will get from an Alzheimer's patient?  And two hours?  It's difficult to keep his attention for 10 minutes.  And I'm also worried about his mood or if he will be scared to go into a room with a bunch of strangers.  There are so many unpredictable factors that make us uneasy.

So, the truth of the situation:  this is our last hope.  It has to work.  Dad's money runs out soon, and this is the only place that will work with him financially and give him a decent place to live.  There are no other choices.  This is it.

Cross your fingers for us today.  

On a personal note... Dad's Grand-daughter was born on March 10th.  Emry Phebe Hardin is beautiful and healthy and will get to meet her Grandpa today!  It's also my husband's 30th Birthday today!  We have a lot to celebrate.  Hopefully that will continue to be true after Dad's assessment.

My list of advice...

I always thought that if I turned my blog into a book, I would include a list in the form of an 'afterward' of what I've learned while going on this journey with my Dad.  This list would include advice or what to expect...

When I hear about friends who are about to embark on an Alzheimer's journey with a relative, I feel compelled to share what I've learned.  It's possible that if I was armed with some of this knowledge, it would have helped. 

A recent conversation with a friend has prompted me to make my list.  Make of it what you will... and feel free to add your own advice in the form of a comment.

My list is geared more toward finding a facility that works for you etc... since I don't have a live-in Alzheimer's patient, I don't have much to add in the area of being a full-time care giver at home.

(I would say the first 3 on this list are incredibly important)!!

1.  You may not think that your relative's dementia is "advanced enough" to be in a lock-down, Alzheimer's facility, but chances are that by the time you have started considering that option, it's absolutely a necessity.

Our Dad was 69 years old (relatively young for an alzheimer's patient), completely ambulatory, very talkative/active, dressed himself, put his dentures on... etc, so we thought that he just needed partial supervision and care.  We learned the hard way after he ran away from a non-secure facility.  In reality, since we were not around him all the time, we had no idea how bad things had gotten and how much he needed that secure environment.  His safety and our peace of mind became more important.

2.  Once your loved one is taken out of their personal/familiar environment, and placed in a home, you will inevitably see a decline in memory, confusion, or behavior.  This is normal.

My Dad could no longer clean his dentures, he was confused about where the bathroom was, and he was constantly trying to escape among many other things.  Every move results in a decline.

3.  Move your loved one to a facility close to you.  There is no point in keeping them far away just so that they can stay in a familiar city or town.  A move is a move is a move.  Whether it's down the street or across the country, your loved one will be equally confused and upset about their new home.

When we moved my Dad, he automatically forgot where he had lived for the past 20 years and instead could only remember his childhood home in Pasadena.  In some of the worst months after the move, Megan and I would need to visit him up to 4 or 5 times a week, so it was imperative that we be nearby.

4.  Do not allow your loved one to take his/her valuables to their new home.  They will get lost or 'stolen'. 

Unfortunately, there were two items of value that we are sorry to have lost.  A turquoise watch and ring that we let him take with him.  In a home, many of the residents "shop" in the other resident's rooms.  My Dad was a big shopper and we always found things that didn't belong to him.  Naturally, things get moved around and none of it is done maliciously, but we couldn't expect the staff to take care of my Dad AND all his things...

5.  Once you truly do believe that your loved one needs help, trust your instinct, gut, and intuition.  

With this disease you learn quick and you learn to quickly trust yourself.

6.  Listen. And Agree.

When my Dad would get upset about his living situation, we would usually try to change the subject.  But once we learned to listen to him, and re-assure him that we will fix the problem tomorrow, he would become happy and trustful again.  He wanted to be heard and he was happy when we agreed with him.  There is no explaining or reasoning with an Alzheimer's patient.  Appease them as much as you can in the moment.

7.  Use the things that they hold dear.  By talking about their hobbies or loved ones, they are able to keep a sense of who they are for a while longer.

Any time we talked about The Dodgers, Fishing, Frank Sinatra (or any music for that matter) my Dad came to life and felt like himself again.

Dad also likes to laugh and tell jokes... and even if we had no idea what he was talking about, laughter went a long way every time.

8.  Be prepared for anything and everything.  This is the most unpredictable disease.

9.  Form a relationship with the care-givers at his/her home.

10. Don't be too hard on yourself and don't let guilt get in the way.  There are professionals who know how to deal with this disease and that's why a home can be a wonderful place.  You have the chance to spend quality time with your loved one instead of being their full-time caregiver.  

(For those of you who are full-time caregivers... your strength, commitment and love are immeasurable.  And I commend you for that.)

Please feel free to add your comments and opinions.  :)

Daddy's Girl...

All parents have hopes, dreams, and expectations for their children.   These may include playing sports, or being a lover of the arts, or having a positive outlook on life, or going to college… (hmmmm, maybe I should be using the word AND instead of OR). :)  So, while Blake and I find that we have many hopes for our quickly arriving little girl, I have one that I am extremely excited about.  I want our daughter to be a Daddy’s Girl.  And she will be, because I know that Blake will be the type of Father I never had.   

It’s difficult for me to remember my Dad as just one type of person.  I have 3 “Dads” in my memory.  The first Dad was fun when he wanted to be, but was also extremely scary, depressed, and an alcoholic.  This lasted until I was about 14.  The second Dad was happier and began to mend our relationship by reaching out to us and being more affectionate.  As a teenager I was put off at first and eventually learned to appreciate it.  But by that time, I was so busy doing all my activities that I didn’t make him a priority and then I went away to college.  The third Dad started when I was 22, and it’s ultimately what he is today.  Obviously there are various stages of Alzheimer’s and he progressed pretty slowly but it feels like it’s been years since I was the daughter, not the caregiver. 

Let me be clear though…  our Dad ALWAYS loved us and continues to love us today.   Of that I’m certain.  We just had a strained relationship.

Obviously this was the way life was meant to be for us, and I don’t get upset thinking about it because it shaped me into who I am today.  And it will shape the future that I want for my Daughter.  She will have the relationship that I didn’t have….

My daughter will be able to look at her Dad with admiration, love, and respect.  She will be able to go to him when she’s upset or needs to feel safe.  He will challenge her in her schoolwork and coach her soccer team.  He will help shape her into a beautiful young woman who can debate politics, but also be the life of the party.   I know the man I married, and nothing is more important to Blake than family.  The future I see with the two of them is endless.  And I’m so excited. 

Megan and I talk about how we missed out on that type of special relationship.  We wanted someone who would check the oil in our car before we headed back to college, or who would give an approval of the new boyfriend, or who could have an intellectual conversation with us.  But hey, it’s life.  We turned out all right!  And it’s not like we didn’t learn anything from our Dad.  Because of our strained relationship and this wonderful disease, Alzheimer's, he has, in a roundabout way, taught us to forgive, to take care of family, and to look for certain attributes in a partner.   Those are pretty important lessons to learn.

Oh, and I’m pretty certain that as a Grandfather, he would have had those Father attributes that I always longed for.  It’s just too bad he never got that chance.  He doesn’t know I’m his daughter.  He doesn’t know what the word daughter means.  And at 8 months pregnant, he hasn’t even noticed my belly.  He’ll never know or understand that he is a Grandparent.