Alzheimer’s Blues: This Will Be The Last Christmas My Dad Knows My Name
Sitting across from my Father this Thanksgiving, him and I quietly eating together, you would have no idea by looking at him. The man is large, hands like hammers that have forged iron their whole life, calloused and full of stories. A face void of wrinkles (and a head void of hair, bless his soul), but bright blue eyes and a wide smile, you really wouldn’t know anything was wrong.
Until you talked to him, and even then, had you not known the man your whole existence like I have, you might not even notice at first. His charisma is off the charts, but who he is, who he REALLY is and always was, that is fading, fast.
So fast, in fact, that I know this Christmas will be the last holiday where my Dad knows my name. My father has Alzheimer’s, and no pain I have ever endured can prepare me (or moreover, him) for what is about to unfold.
It is a disease you wouldn’t wish upon the kin of your worst enemy, so imagine being forced to watch someone you adore blow away into ash as the result of it?
The thing is, many of you already have suffered through this exact scenario and many more of you will, which is the sole reason I am writing this. Alzheimer’s is ugly and debilitating and soul-exhausting, but we are not alone (which makes it hurt more AND less, if that makes sense).
I am going to tell you how I intend to cope with the next 365 days (and well beyond) in hopes it gives someone else the strength to face this awful disease with someone they love if they are ever in the same situation I now find myself knee-deep in.
To Watch A Hero Fall and Be Helpless About It
Nothing you have ever gone through in life will prepare you for someone you love (namely a parent) getting Alzheimer’s disease. My Dad was a world renowned freelance artist with some very cool, iconic, pop culture designs and brands being designed by him.
One GREAT example: my Dad was Dunkin Donuts’ first designer and illustrator. The first (and best, of course) Munchkin box from Dunkin Donuts? The yellow one with the adorable little bakers on it? You remember?
That was all my Dad.
And there is more, but this isn’t about who he was so much as it is about who he will soon be, which is to say, ghosted within his own mind. No memory that he created an iconic box for an iconic brand that went on to take over the world (pre-Starbucks, btw). And that is but one small piece of one, single memory. He also loses his house (he built), his ability to drive, and slowly, the most important memories of all, which is of himself and of us, his kids.
Thing is, as hard as it is, he is lucky to be clocking out right now. The world in 2017 is a bag of flaming shit on the universe’s doorstep. But for us, for those around him, watching a man you looked up to your entire life start forgetting your name is like being prodded over and over again with a hot iron. It never stops being painful, no matter how many times it happens.
Please understand, I am not making it about me, but I want there to be a piece written out there in the ‘ether of the internet’ that may help some other people cope with watching someone you love’s mind die inside them while they stay alive and slowly become more and more unaware of what is happening around them. I have lost a best friend to suicide, have been water boarded, got bullied for two years so bad that I start skipping whole years of school.
But none of that even touches on how painful THIS is. A thousand searing arrows would be easier than this, and anyone who has gone through this before with someone they love can attest to this, ten times over.
It will beat you down but you stay strong as you can for THEM, because you know they would do that for YOU.
Grieve but Believe (Because it Will Only Get Worse)
First things first, once you have seen the starting signs of Alzheimer’s, the race has begun, unfortunately. It hits like a monsoon and once monsoon season hits, it stays. Your strongest urge at this point will be to be angry as HELL at life in general (and perhaps a little bit angry towards whatever God you may or may not pray to) and those reactions are normal and justified, but only for a little bit.
You see, this isn’t about you, as much as it feels like you are the center of it. No, you are just a victim of the disease as well, but your parents (or grandparents or whoever has it) are the center of it, and the minute you make it about you or how hard it is on you, that undermines their REAL struggle.
So be aware it sucks asshole, and be aware part of it will ruin you (it gets SO ugly) but be extra aware it is about the comfort level you help provide that person. Treat them how you hope YOU would be treated were that you, lost and scared within yourself.
When he or she is looking at you screaming because they don’t know what is going on and anger is one of the first things humans feel when they feel helpless, that is not your Dad or Mom or Pop Pop yelling at you. They are there but they are buried DEEP in there. THAT is the disease, and you need to remind yourself that constantly because, like I said, it gets ugly. If you visit and you give time, you will be the one who gets the heat because they have nowhere else to aim it. Be strong enough for that, and keep telling yourself it is NOT them, because it truly isn’t.
Don’t yell back or flip a table, that is like being mad at someone for going bald from Chemo. They love you, but a disease is covering their brain in plaque and sadly enough, you are just another strange face to them at that point, as brutally hard as that is to grasp.
Why I Am Blessed (Even Though This is Awful)
This is where the article will veer a little and you might be like: huh? This disease is coming on fast and with ferocity, so to say I am blessed may sound silly, but I need to type it out and remind myself. Why am I blessed, even though this is one of the hardest things I have ever had to face?
Because I GET this last Christmas of him remembering my name.
I got to eat Thanksgiving dinner with him, with him still recalling some great memories from yesteryear, though barely.
But that is how I am blessed. Alzheimer’s is a wall of fire, and once it starts and spreads, there is nothing left of the person you love but their shell (and even that begins looks different as they inevitably lose weight and start to waste away) but I KNOW I have this Christmas. How many people who suffer tragedies can look at it that way?
I get to have another Christmas with my Father, even though 70% of him is already buried in there, that still gives me 30% of him, which is more than most people who know someone with this awful disease sometimes get.
Make Peace With Them (While It’s Still Them)
I have also had (and made the) time to make peace with him.
I know I was a druggy, cocky, fuckbag as a teen (didn’t MEAN to be) and a year or two back I sat with him and ironed it all out. I apologized I was a pain in the ass and he apologized if he didn’t always handle it as well as the could have.
It was amazingly cathartic for both of is, and if I can give ANY advice to anyone who is dealing with the loss of a parent or grandparent (or anyone for that matter) to Alzheimer’s, it would be to work out your issues, clear the air while you can, let them know you know they are scared and you WILL be there for them, no matter how ugly it gets, because they were there for you.
Making peace with people means admitting faults and owning up to them, so it isn’t easy, but the sense of peace you will get after and knowing that the person you love, the person you told that to, knows that once they start to go you will be there for them, that will give you BOTH a sense of closure that few get from this awful epidemic. It will not be easy, but you will both be closer for it, I promise.
The Only Thing I Ask of You…
Already been posted to my Facebook wall and my Twitter, but I would remiss not to ask you to give to Alzheimer’s research this season. I am not saying don’t give your kids gifts, or donate all you have, but this disease has already taken two family members from me and I know it affects more families than it does not at this point, which speaks to just how widespread it truly is.
But if you could DONATE TO THE CAUSE, even a single dollar towards Alzheimer’s research is a dollar closer to us understanding this traumatic disease and maybe, one day getting closer to the day when articles like this will no longer need to exist.
For me, this was therapy. I don’t want sympathy or pity, nor does he. I know I need to be as strong as I can be in the next few months (and the next few rest of my life) so I am just approaching it all one (holi)day at a time.
But this wasn’t about me or my Pops or any of that. It was for people who know this awful feeling and people who WILL end up needing to read this one day to help them. Hell, I started a small support group among friends, so I know how hard it can get. If this helps one other person deal, than that is why it is being written.
I was very lucky to have been raised by the people I was (as much as I would love to say otherwise sometimes) and to see someone who helped make me into the person I am being slowly made into nothing is a fate worse than death, but hey, I am gonna make this Christmas (and every precious second before and after it) count.
Life deals us and our loved ones the cards it deals. We have NO say in any of that. How well we play that hand we are dealt comes down to us.
This sucks, but at least I do have one more holiday, and I am gonna squeeze every droplet of joy out of it for him, while I still have the chance.
He was always there for me when I was scared or thought there was a monster under my bed. Now it is my turn. Only the monster is real this time.
Featured image by Tobi Gaulke — Flickr.