My mother has gone through many changes during her progression with dementia. Much the same can be said for me. I guess it's a cliche. But the only analogy I can think of is an onion. You peel away one layer only to discover more.

It was 4, maybe 5 years ago, when I first came upon this site. Today, I don't even know how I stumbled upon it. But, at that time, there were fewer members and many of us got to know each other well. I benefitted greatly from their emotional support during that time. Looking back, I believe that right after diagnosis is when most people seek this forum and need it most. Today, I rarely come here. I'm in a different place - passive acceptance, I suppose. A different layer.

In many ways, this is a positive change. Like the post-rebuilding phase after a bomb has gone off in your life. The dust settled, life was re-established, and now even the buds of happy moments spring forth. But in other ways, I feel guilty. Like I've just rolled over and let the disease win. Like I don't have any fight left in me for my Mom. Often, I feel as though I am letting her down by trying to move forward.

It's a battle I can't win though. To keep trying would be like climbing up a hill in well-oiled slippers. The fire in my belly is gone.

I don't even feel like I have anything to offer newcomers to the site anymore. I used to feel like I could help but I don't now. And when I read about their new challenges, it rips the scabs off in a way. Maybe I've reached a point when I can't relive the early experiences anymore.

Sometimes I wonder if this is why advocacy for dementia pales in comparison to causes like the Susan Komen Foundation for breast cancer. Dementia, as an incurable progressive disease, sucks the life-force out of everyone around it. When you get to an "ok" place emotionally, you often have nothing left but quiet heartbreak. You don't even have the energy or emotional wherewithal to try to explain the unexplainable to people who don't get it. And you get tired of trying to make others understand. You start to accept the division between those who "get it" and those who don't and it seems impossible to instill understanding and empathy in the latter.

All that being said, tonight I spoke with someone very new to this "journey." I understood that horrible mix of new, raw emotions. But there was a hardened side of me that knew deep down that this was only the beginning for that family. And there's no way to get through it other than to go through it. As horrible, and awful, as it will be. I wish I could undo that for someone but I can't.

I tried to offer the benefit of my understanding because I share the experience. But even then, it felt like pouring a cup of water onto a fire of anguish. It's not enough. It will never be enough as long as all the varieties of dementia turn those we love most into strangers.

So I guess that's what brought me back here tonight. Thinking of this beautiful person and how that life is being changed as my own mother's was. And also how helpless I feel in the face of a cluster of diseases with such little hope. How I did everything I could tonight but it still seems like not enough. It's just never enough. You keep peeling and peeling and each layer gone only reveals another; even if you reach the core, what relief is there? The fact still remains that dementia runs its course and there's nothing that can change it. All you can do is watch the layers unravel, one by one.

To me, it's a kind of victimization because you feel helpless to it. Aricept? Namenda? Phsssh. That's like sandbagging efforts during Hurricane Katrina. So what then? Seroquel, risperdal, geodon? Pharmacological management when we're begging for a cure. It feels like screaming for help in a sound-proof room. Nobody can hear us.

So here we all are. All in the onion. Some on the outer layers, some deep inside. It's a terrible pun - but I think all of it is just a big, stinky mess with many tears involved.

Welcome back, Fortune Cookie. I suspect that the deep answer at the core of the onion is to look at life as a whole. So much joy mixed in with the tears of sadness. Each layer of the onion presents me with a new horizon. Oh, I love those horizons. Something new to explore every day. New dimensions. New love. --Jim

By the way, Fortune Cookie, you are welcome to join us over the back fence in rambling musings. All the neighbors would cheer you up. And I'm sure you'd do the same for us. We try to buoy each others' spirits. And it seems to work. --Jim

quote:

Originally posted by Fortune Cookie:
Dementia, as an incurable progressive disease, sucks the life-force out of everyone around it. When you get to an "ok" place emotionally, you often have nothing left but quiet heartbreak. You don't even have the energy or emotional wherewithal to try to explain the unexplainable to people who don't get it. And you get tired of trying to make others understand. You start to accept the division between those who "get it" and those who don't and it seems impossible to instill understanding and empathy in the latter.

I have read this post so many times over the past few days. This is how I am feeling right now. The life-force is just sucked out of me.

Maybe it's because I keep running away from this disease. I don't want to stop and let it catch up to us.

Even though the weather is still very warm here, the leaves have started to change and are beginning to fall. Fall - Autumn - The time of year when things start to slow down and prepare for the long dark winter.

And this again, is how I am feeling. Maybe it is time to slow down and prepare. There have been so many ups and downs over the past year. Times I thought we would loose Mom and then she bounces back. But like a bouncing ball, each subsequential bounce is lower and lower until finally the ball slows and rolls to a stop....

I know I will survive this journey. There is no alternative....

But who will I be when we reach the final destination?? The life-force being sucked out of me now will be replaced, but right now, looking forward, it's a milestone I cannot fathom.

Serendipity

Give it precious time. You'll fathom it. Believe me. You are already beginning to fathom the full wonders of life. --Jim

Serendipity,

Your post reminds me of why I write. When you can put into words a feeling that resonates with someone else... there is human unity in it.

Sending you & others healing thoughts as we share this experience together.