Friday, June 29, 2012

Alzheimer's Walk Kick off Event!

It's that time again!  Getting ready for the walk!  I have updated the link to the right, and that will bring you directly to our Team Page for the Long Beach Alzheimer's walk where you can join our team, make a general donation, or even donate for a specific walker!  I am already recruiting people and I think we're going to have our biggest walking group so far this year!

As last year's top Fundraiser for the Walk and as Co-Chair of this year's Alzheimer's Walk, I had the privilege of sharing our story at the Alz Walk Kick Off Party two days ago.  I want to share it with my readers.  It's a wonderful way to revisit our family's story and our many reasons for walking!  So enjoy!  :)

(Picture of Me, Blake, and Emry in purple for the Kick off Party)

"Tonight is all about energy!  I hope we’re all getting excited for the walk this October!  It will be here before we know it.

I’m reminded every year that with a disease that can make many of us feel so helpless, we can find empowerment in participating in a walk and fund-raising!  And that was my motivation last year!

This is only my third year walking, and while I’ve had many distant relatives battle with Alzheimer’s, it wasn’t until I became the main caregiver for my Dad, that I became more involved.  I never thought that at the age of 26, I would become the decision maker in my Dad’s life, and ultimately his main caregiver outside of his home.

So, I started a blog called, “The Upside to Dementia” (which is also my team name).  A quick note about myself, I am an actress and singer, so I’m not what you would call shy, and I love to share our story with everyone that I can.  I find it very therapeutic mentally and emotionally, and it has also become a useful tool when fundraising.  Because people are witnessing the daily struggle of Alzheimer’s through my blog posts, they become more passionate and involved when the Walk rolls around every year.  So, I’m happy to say that last year, my team raised $4850.  I was blown away by the support of loved ones, as well as the support of others who have their own relatives battling with Alzheimer’s.  I’ll will speak more about the fundraising, but first want to tell you a bit about our story….

My Dad first showed signs of Dementia when he was 65, and now 7 years later, he is in the advanced stages of the disease.  Financially, it has been challenging to keep the level of care that he needs, and we had to move him to a cheaper facility, and from there, he will hopefully be moving into a new Memory Care Facility at the Los Angeles Veterans Association.  As many of you know, any change in the daily routine of an Alzheimer’s patient is tough, and these moves deteriorate his condition each time.

Fortunately and unfortunately, my Dad is physically very healthy and relatively young, so it seems we will get to witness every terrible stage of this disease.

My Dad was at first forgetful, then paranoid, then confused, and then a mixture of all those and more.  And I will never forget the day I walked into his mobile home and was almost knocked over by the most foul smell.  After searching everywhere, I finally noticed the microwave door was just barely cracked open.   Inside, I found a forgotten piece of raw fish sitting in a bowl with flies swarming around it.  It had probably been there for a few days.  That was when we knew he needed professional help.

After a couple months of having a caregiver watch him for a few hours every day, we knew he needed 24 hour care.  When we moved him to a board and care, he climbed out the window and ran away in the pouring rain.  Luckily we found him pretty quickly since he was the only person walking the streets in the rain.  When we moved him to a locked Memory Care facility, he still managed to escape and the police found him a few miles away.  He had a gash in his head and I met the ambulance at the hospital where we sat for 5 hours just to get stitches.  He has also ran away from his current home after a gate was left open by gardeners, but was found safely by a stranger in front of Vons.  I think it’s safe to say, we have an escape artist on our hands! 

Since moving him to a facility, my weeks have been filled with anxious phone calls, visits, weird behavioral problems, doctor’s appointments and basically just the maintenance of all the necessary aspects of his daily life. I always reiterate to people that Alzheimer’s is so much more than just memory loss. 
And while I have a lot of responsibility, ultimately at the end of day, I am not a full-time caregiver because he lives in a home.  The amount of respect and admiration I have for full-time caregivers is insurmountable. 

But, like I said before, the financial toll of this disease is probably one of the most stressful parts. Payments for care are estimated to be $200 billion in the United States in 2012.  So, we are just one in millions of families dealing with this issue.  After July, my Dad’s savings will have run out.  He has a $700 gap in what his care costs per month and what his income is every month.  (And, he has really affordable care in comparison to most.)  I thank God that he was in the Air Force and has qualified for SOME veteran benefits, and I am waiting for the call for when he will be given the okay to be transferred to a new facility run by the Veterans Association.  In the meantime, I’m not sure what we’re going to do.

So here I am, age 29, married, with a brand new daughter (who, I have to say is probably the youngest volunteer that the Alz Assoc has ever had!), and my Dad cannot enjoy the years of being a Grandpa.  He barely noticed my pregnant belly, and most of the time looks right through my daughter as if she isn’t even there.  The other day after greeting her with a “What’s up, dude?”, he then called her a “cute little booger”.  Any little sentence that comes out of his mouth and actually makes sense is the type of memory I have to cling to.  They are funny and sweet, but by no means are the typical memories of a Grandpa spending time with his one and only Granddaughter. 

When I look at my life, I realize that many aspects of it have evolved from this connection to Alzheimer’s.  I am thrilled to be active in the walks and with the Alzheimer’s Association.  I have also started an Entertainment Business called The Sassy Songbirds, where we perform for Alzheimer’s patients and seniors in Memory Care, Assisted Living Facilities, and Retirement Communities because I’ve seen first hand how the power of music can raise my Dad’s spirits.
So, when I think about our situation and the situation of many of American dealing with Alzheimer’s, I get fired up.  I get fired up when I think that

5.4 million Americans are living with Alzheimer's disease.
One in eight older Americans has Alzheimer's disease.
& most of all:
Alzheimer's disease is the sixth-leading cause of death in the United States and the only cause of death among the top 10 in the United States that cannot be prevented, cured or even slowed.

That is scary.

So, the name of our Blog may seem strange (“The Upside to Dementia”), but my family has no choice but to find the upside to our situation.  My Dad’s sense of humor has remained fairly intact and we have many funny stories of lost shoes, naked episodes, or just crazy moments facilitated by my Dad.  Laughter, music, and dance have become a coping mechanism for us, although tears, frustration, guilt, and hopelessness are usually lingering nearby.  But, I will tell you the biggest upside (because there are a few when you look at the glass half full):  Because of Alzheimer’s, I have more of a relationship with Dad today than I had 10 years ago.  

So, yes I’m walking for my Dad, but ultimately, I’m walking for everyone who has yet to get the disease.  I think of my future.  My sister and I used to joke after yet another interesting visit with my Dad, that someday we’ll be the ones sitting in an Alzheimer’s home together driving each other crazy.  It’s not really that funny, but it’s quite possibly the truth.  It’s too late for my Dad, but what about the next generation and the next one after that?

So, my motto, when it comes to fundraising is this:

It never hurts to ask.

Throw a party, have a raffle, talk to your neighbors, reach out to friends on Facebook…. Get people involved in your story.  This disease doesn’t just affect Seniors & Baby Boomers… no one is off-limits.  You’ll be surprised to see how many people you know who are affected by this disease! 

So, let’s get fired up for our loved ones, let’s get fired up to fundraise, and let’s get fired up to Walk to End Alzheimer’s."

Now What?

I feel like someone is playing a mean joke on us.  In the past year, Dad has had a broken nose, Scabies, and a Staff Infection... now he has a Hernia.  I guess we're just going down the list of all the most annoying reasons to spend time at the doctor's office.  His Hernia is intermittent, so it is not always presenting itself, but when it does, my Dad is in pain.

Two weeks ago, we spent two straight days in the VA ER trying to assess the problem.  The first day, we got seen after 3 hours, but they couldn't find anything wrong with him at that point.  The next day, with my baby in tow, we waited 4 hours and I finally gave up.  We went home without being seen.  We decided to make an appointment for the following week and to just treat Dad's pain with Tylenol in the meantime.  

His options at this point:  Surgery or Live with it.  Basically the doctor does not recommend surgery for my Dad (I have to agree that it would be pretty awful for all involved).  She wants to fit him for a type of mesh belt that he can wear under his clothes to keep the hernia in.  It's pretty clear to me that he will have that off in two seconds flat.  I really don't see a good solution to the problem.  We have an appointment in a week with General Surgery to see about this 'belt'. 

Still no word on when he can move into his new home... July is upon us... the last month that he can afford his care at Valley View Gardens.  Come August, he will be about $500 short.

Picture of "Cowboy" Dad hanging out in the ER...