Picture yourself in a movie. You’re standing on a sidewalk…in a big city…at a busy intersection. You look around, everyone and everything around you is flying by at the speed of light. You try to concentrate but everything is “blurry-like,” happening so fast, concentration evades you.
Well, if you’re like me, you’re not in a movie. You’re in reality, under the age of 65, living with Early Onset Alzheimer’s Disease or some other form of Dementia.
I know I can’t speak for everyone, for everyone’s situation is specific to that individual, but I’m pretty sure certain similarities can be found.
For instance, you’re at a family gathering. These are people you grew up with, spent most of your life and time with, laughed and cried together, supported one another in times of need. You get the idea. Now, you’re sitting on a sofa, surrounded by these very familiar people and you cannot get into the conversations. You hear what’s going on and, under “different circumstances,” you would’ve jumped right in to add a comment, an insult or a funny remark, however, by the time you are able to form a complete thought, the conversation has continued at light speed and your comment or funny remark would’ve made no sense. Or worse, when you do try to jump in, you stutter so bad, everyone turns and stares at you. So you just sit . . . and listen . . . and try to keep up.
I experienced this at Easter this past year. One of my brothers-in-law noticed my embarrassment when I stuttered trying to jump in the conversation. ” He came up to me and said, “Hey, we’re all family here. Nobody’s going to judge you. Stutter away!”
This also happens in everyday life. Conversations with your immediate family are often interjected with, “you’ve told me that before,” or “oh, I remember when you asked me about that yesterday.” They do it in a way that is not insulting, but just as a way of saying, “we understand and we love you.” At least that’s what my family does with me.
I try to find humor in this by saying things like, “I know I told/asked you yesterday, I was just double checking. DUH!” Or when my wife and I are watching a movie and I get so excited or crack up laughing at a certain part, she will turn to me and say, “do you not remember seeing this movie a couple of weeks ago?” I say “no” but then I say, “you know, me having Alzheimer’s will save you a lot of money. You can buy me only 1 movie and I will watch it every few weeks and it will be like seeing it for the first time!”
Some people don’t understand humor when it comes to Alzheimer’s but, when you’re making fun of yourself and not others, well, I don’t see anything wrong with that.
I have always loved and embraced humor. Thankfully, my friends and family know and understand this and laugh right along with me. They send me jokes, funny sayings, cartoons … all Alzheimer’s related.
When I sent an e-mail to my brothers and sister, telling them of my diagnosis, my oldest brother sent back a response saying, “just letting you know, you sent this yesterday also.” After laughing hysterically, which I needed to do in such a bad way, I knew things were going to be OK.
One of my childhood friends will say, “hey, do you have that $20 you owe me?” Of course, I immediately go into panic mode, trying to remember whenI borrowed $20. This is a friend that will drive 3 hours, each way, just to come spend a few hours with me.
Then, as the saying goes, “Along with the GOOD comes the BAD!”
This is what I call my dark or foggy times. It happens with no rhyme or reason. It just comes along, punches me in the face and, well, things get a little dark.
It’s sort of like spontaneously combusting, except I burst into tears instead of fire.
I’ve always been an emotional person but since developing EOAD (Early Onset Alzheimer’s Disease) it has heightened the emotion. Something could set me off as simple as a baby or puppy video. Or, a fond memory will pop into my head of “happier, more normal times.”
Watching a sad or emotional movie? FAGHETTABOUDIT!!!! I literally fall to pieces. I cried for about 20 minutes after watching “American Sniper” with Bradley Cooper. (if you haven’t seen it, it’s a must see, but, I digress)
Then there are the times when I don’t know why I’m crying or even when I’m crying. Tears are now just so commonplace, I don’t even recognize that they are streaming down my face. Bizarre, I know, but Alzheimer’s is a very bizarre disease.
I know I’ve probably said this a lot (and yes, I do remember saying it over and over again! lol) but I am not saying all of this to gain sympathy.
I DO NOT WANT SYMPATHY NOR DO I WANT ANYONE FEELING SORY FOR ME!
I am merely trying to give you a perspective of what a day in my life is like.
DO ALL OF THESE THINGS HAPPEN MULTIPLE TIMES A DAY? YES!
EVERY SINGLE DAY? NO! (but more than not)
DO I WISH THIS ON MY WORST ENEMY? NOT “NO” BUT “HELL NO!!!”
I took on the responsibility of becoming an Advocate for Early Onset Alzheimer’s Disease. I don’t have the world stage of a Maria Shriver, Seth Rogen or other folks who are able to advocate in a much bigger way than me but, I do what I do for it is my passion.
In my Advocacy speech I say, “this is the best job I have ever had in my entire life . . . that I don’t get paid for!”
Trust me, due to my Alzheimer’s Disease, I’ve met some of the most wonderful, courageous, artistic, compassionate, beautiful people that a paying job would have never allowed me to do.
You gotta see the positive!!!
Until next time . . .