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.

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.

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. 

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."