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

Still trudging along...

Well, it's September and Dad still hasn't moved to the new West LA Veterans Home.  Our family is scraping up the extra money he needs to pay for his care.  But I'm starting to think that we might need to move him temporarily until the VA opens... $700 extra is what he needs per month and that is just too much.  Ugh... moving. 

On another note, Dad has scabies AGAIN.  This is his 4th or maybe 5th time... I don't know because I stopped counting.  I walked into his home to pick him up for a routine Psych visit and took one look at him and knew.  He was scratching in all the same places.  Luckily since we were going to the VA clinic already, I begged and pleaded to be seen so that we could get the medicine he needed for his skin.  Success!  I saw the problem, tackled it, and solved it all within hours!  All with a baby on my hip and one eye on the old guy with Alzheimer's!  Sorry for tooting my own horn, but normally the Scabies situations are much more drawn out.  (Although, the Nurse Practitioner didn't think it was scabies -why is it so hard to diagnose?- and I politely told her that I disagreed.  At this point, I know exactly what it looks like and how my Dad reacts to it, plus I did find out later when we arrived back at Valley View Gardens, that another resident also has Scabies.)

Scabies is highly contagious but I have never contracted it from him... my main worry this time was Emry.  I made sure she had absolutely no contact with him, and I probably washed my hands 20 times that day.

Dad also had another staff infection but this time in his armpit and it was really painful.  We opted to go to urgent care instead of sitting for hours at the VA ER.  $200 later, they gave him a very painful injection of Lidocaine, lanced it open, squeezed the heck out of it, and sent us home with an antibiotic and an order to come back two days later.  Again, I washed my hands countless times that day.  

Anyway, wish there was more exciting news to tell.  The Alzheimer's Walk is less than two months away and we're having a big fund-raiser at the end of the month.  More info on that coming soon!

Below is a picture of Dad and his favorite nurse at the VA Clinic in Whittier.  She is so good to him.  Thank you Vanessa!

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."

The small pleasures and the big

If Alzheimer's has an upside, I would say it's forcing us to reconnect with the small pleasures in daily life that we often overlook.  Like a car ride for example.  I took Dad to an appointment the other day, and while most of us hate getting in the car to fight traffic and rush along with the other million drivers on the road, to Dad this ride was a simple pleasure.  It must be like when you buy a new car and can't wait for that first time behind the wheel.  There's an excitement and exhilaration and an utter happiness.  That car ride had that effect on Dad.  I couldn't remember the last time I smiled so much while with him.

Let's not leave out the most important part of the car ride... the music.  Some Frank Sinatra, Peggy Lee, and Ray Charles (which really made us boogie).  Dad even drummed his hands on the dashboard to one of Ray's songs.  My Mom was following us and could see us bopping our heads to the music.  

So, in turn, Dad's small pleasures turned into my small pleasures as I was able to enjoy a wonderful morning with my Dad.  I would call that a small pleasure in most people's lives, but not ours.

The big pleasures don't usually creep up on us as much as the small ones do.  You can see them coming because most of the time, you've worked hard for them.  Our big pleasure was participating in the Long Beach Alzheimer's Walk this past Sunday and becoming the highest fund-raising family team!  What a moment.  I almost got a little emotional.  We made this all happen by just asking for the help and support of friends and loved ones... And they were kind enough to oblige.  We can't thank everyone enough.  We've made a statement that Alzheimer's can't keep us down, and by doing this walk and fund-raising for the cause, we will eventually beat this terrible disease.  Because honestly, more and more people will start developing Alzheimer's, and it will come down to families and friends fighting for their loved ones.  Nothing is stronger than that.

Below is our Upside to Dementia team photo and a video of us winning our fund-raising prize!!!