As I try to shake the “cobwebs” from my mind tonight and continue my story after being diagnosed, I sit and think “why tonight?” You see, today, one year ago, my dad passed. I did a short blog this morning about him and our story. But tonight, something just seems to be at the edge of my mind that I need to continue on where I left off a bit ago about my diagnosis. Up to now, you should know enough about me that as a Christian I don’t believe in chance, coincidence or fate, but in God’s timing. So here I am, after a tough emotional day, ready to continue opening wounds and insight on my coming to terms with having this disease.
As I stated earlier, coming to terms with this disease didn’t come easy and didn’t come quick. There was so much lost time in between, time that I can never get back. As a person with Alzheimer’s you lose so much time as it is, that the time I lost due to numerous doctors using me as a guinea pig, to poke and prod, to test and guess and experiment on, it just didn’t seem at all fair. What did I ever do to them to make them take so much of my “time” in my life away from me? Did it take time away from their lives? Not in the sense of their “home” life or personal life. I was just another patient to them – part of “their job” as you would have it. Clock in – ok, Mrs. Wagner again, let’s see what we can do to her today? Clock out – hi honey, I’m home, long day, perplexing patient I have at work, but enough about that – how was your day? Wine with dinner? Perfect. Honestly, that’s how I always pictured each doctor as they went home at the “end of the day”. Where was I at you ask? (Because I’m sure someone out there is asking that question). Well, I sometimes got to go back home. When I did, it was chaos, exhaustion, screaming at the littlest of things (a knocked over picture by the cat or my husband just being in the way of where I needed to walk) It was like someone took a blow torch to my brain. Everything would feel like fire burning on the inside. I know that doesn’t seem possible and not a great analogy, but hey, for me, that’s exactly what it felt like. But it also felt like I was a ticking time bomb just waiting to go off – again. I think as I was trying to grab onto some sort of ordinary life I still had, I was at the same time becoming my own worst enemy.
Hey, they were giving me meds upon meds for this and that. Why not just take a couple extra tonight – to escape. Escape! Another great word and a word to this day I still cling to, wish for, hope for, plan for, give anything for.
I try to “escape” constantly. Everything gets jumbled, so don’t I deserve a break too? Like the glass of wine mentioned earlier about the doctor and his wife. It’s their escape, I needed one too. I had finally come to terms about my life – that is, not committing suicide. I couldn’t do it. I couldn’t leave behind those that loved me so much. I seen what it did to my brother’s wife and his girls and to my parents. I just couldn’t have any of them go through that again. But I needed something to take me away from my everyday reality at the clinics and the testing. Alcohol was out of the question. I was never a heavy drinker and the mixture of alcohol and my meds meant I would wake up to throwing up – which btw was the one thing I loathed the most of all sicknesses. I never smoked, so there was no starting that nor doing any illicit drugs. Well, heck I was on enough “prescribed” drugs, who needed more pills to add to the mix. So what do I do? Because I needed to do something.
I couldn’t tell anyone how i felt. The first thing I learned once diagnosed was that “you could NOT trust anyone” with your inner most thoughts. Of course, they say you can, and there were people left and right “ready to help” but yeah, tried that. They of course put me on antidepressants, numerous anxiety meds, numerous “sedating” meds to keep me “docile”. Until one day that all stopped, because my husband seen it wasn’t helping me in any way, just making it all much worse. Nope – couldn’t tell a single person. Not even the many counselors, therapists, psychiatrists or psychologists I seen throughout this ordeal. I already did enough psych tests on a monthly basis. That was enough time for my brain to be picked apart.
So I reached to the one thing instilled in me since I was little. God and church. The one place I felt most protected and safe. The one “person” – that is God – whom knew all of my darkest secrets and thoughts. I could pray and tell Him everything, and I did. It worked for a while. It still does, so please don’t think I’ve given up on my faith or in Him. I haven’t and never will. But this world, this reality, is harsher than I ever thought imagined. “Man” can only give you so much advice and so many scriptures before in the mind of a person with dementia, that it doesn’t soak in quite as well anymore. Also when you’re sick with this, you tend to start pushing those away whom don’t seem to be helping you anymore – or never really did. I know from my point of view that it’s not that we don’t care or don’t appreciate it all, but pushing away is so much easier than dealing with “it”.
So back to earlier – Escape, again. How do I do that. I’ve certainly tried everything. I grasped onto those things that used to give me pleasure that I had pushed away prior. The hobbies, the travel, the conversations, the beach. I started “living” again – in a way. Definitely different. As I approached something I once loved, for example, the water. It just didn’t feel the same anymore. I tried everything. Just no satisfaction. But it was a diversion at least. I still try to find those diversions here and there.
I miss who I was. I miss enjoying life and this world. I miss feeling loved, being held, and being someone’s love, wife, mom, and friend.. because even though I’m still all those things to those in my life, they unfortunately seem to me like they’re walking on eggshells around me. Pretty bad when you’re too afraid to upset their lives and be treated differently. I miss that. I know they don’t want to add stress to my already stressful life and they don’t want to “bother” me with their own stories of their lives, work or school. But that’s what I miss. No, I don’t process things the same, but I still want to hear about all of it. I want to be able to smile, laugh, encourage them and be there for them when they need a shoulder to cry on too. But, that part even today, hasn’t changed much.
I guess for those looking in from the outside its hard to understand. You think you’re doing me a favor by treading lightly around me, not putting too much pressure on me or even include me in things. Yes, there are days where I can’t be a part of everyday things and I need to be left alone to deal with just being me. But there are all those other days where I still want to be involved.
Looking back now, my escape was to take a little extra of my meds to sleep over 18 hours a day and take myself out of the equation altogether. Then there are times when I just close myself in my bedroom with my music and my laptop or a book or watch a movie. Escape to some “fantasy world” in my mind with a character from one of those movies or a book. I’m sure there’s some “technical” word for whatever this is called. But to me it’s just escaping. To block out everything and be alone with my dreams.
As you seen throughout this particular blog that I mention “then and now” either together or separate. There really isn’t any difference between a few years ago to this very day I’m in. A little less testing but still the same pain and anxiety.
Once I found a way to cope with my disease and figure out on my bad days to just “escape” and get through it, I also started finding joy in new things. I know part of this is because of the combination of meds were starting to work, but consciously, a person’s brain needs to “fix itself” too. To keep sane and bring back those precious words of hope and purpose into their thoughts.
When and where are irrelevant – its in the how. It’s waking up one morning and saying ok, today is a good day, I’m going to do this and do that. Then when I go before my doctors, I’m standing instead of being on my knees to their mercy. I’m finally fighting back. Stubbornness and a bit of determination became my focus – hey, any type of focus was good for someone who once thought just giving up was a better solution.
Do I determine my meds and my tests now – no, not really, but I do know the why and if it’s actually warranted or not. Of course on my bad days, my husband steps in, but no matter what, we stand and fight back. I’m still at their mercy if I go into the hospital, but here at home, I’m not. I now determine how things are going to happen. Is it still tough? Yep, some days are even harder than before. But now I have a reason, a purpose – and that’s to make sure NO one else goes through what I did.
Advocacy and awareness. I push, I promote, I post, I open up – whatever it takes to get my message and my story out there. I don’t want any recognition, but I do want someone somewhere to listen, and to change this process. Step up, own up, change, learn and advocate for all those voices that can’t speak for themselves. Are some “bored” or “bothered” with my unending posts, yep ,but that’s ok. Because other than them, someone out there has a loved one going through this, and hopefully they will step in and help that person and be their voice, be the backbone and stand up for a “reasonable” amount of testing and “evaluating”. That’s what matters.
I am Melanie Pearl Wagner, a survivor, a fighter, an advocate and a force to be reckoned with. I still stumble, fall, break, bend and “escape” some days – but my promise is that I will be back and I will not back down from what’s right and I will never stop pushing back to end the pain of others. No, I can’t take on everyone, nor the world by far – but I can take on one person at a time – that in itself will eventually lead to a bigger and better world for those with Dementia.