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."
