Early onset dementia (EOD) puts its victims and their caregivers into predicaments most of society doesn't expect or understand. Because of this, EOD easily and often threatens to bring poverty to families in the prime of life. (This is the last thing families need, when they're already dealing with a myriad of losses and challenges, such as shock, grief, and the gazillion-and-one responsibilities of caregiving.) Let me illustrate with a story: A couple years ago when I talked with community organizations who supposedly deal with patients living with dementia, I explained that Dad didn't understand the need for someone to stay with him during the day while the rest of us could go to work and school (I was in a full-time masters program at the time). I also explained that he physically walks out of day programs and that one of us had to skip work/school to stay at home with him. I said that we were desperate for a solution so that we wouldn't lose our livelihood.

These community organizations responded, saying they had no way to help us, and then they said, "Do your parents have a church or family in town?"

Well, when I explained our difficult situation to our relatives and my parents' church, their response was, "We can't help you. Have you talked with the government?"

When I spoke with our social worker, she said, "Well, we can't conjure up a solution out of thin air. We can't help you."

And that was it... Either Mom faced losing her job or I was going to put off my studies (with no way of paying off student loans) so that one of us could stay at home with Dad full time. We had no clue what the future would hold, but we knew we'd probably end up in debt and in trouble. It felt like we were drowning, and most people around us had no clue, because they didn't know what this kind of drowning looks like so they didn't recognize it in us. And when I tried to explain to relatives and church members just how desperate we were, some of them got defensive and attacked ME.

However, a few extraordinary families and churches (not my parents' church so much) helped us bridge that gap. They threw us a life-preserver in a very dark and hopeless situation. Because of them I was able to finish school, and we were able to move to a new place where our whole family lived under one roof and all of us kids pooled our resources so that Mom wouldn't have to work and could stay home with Dad.

Oh, the lack of understanding in our whole society about what dementia is really like for its victims and their caregivers is absolutely stunning. I feel grieved at how under-prepared society really is for the increase in Alzheimer's/dementia diagnoses that will come our way as the Baby Boomers age.

But on a much brighter note, the incredible generosity in the hearts of those who reached out with help for us is even more stunning. I feel encouraged that with compassion and sensitivity from people like this, there is still some hope for future dementia sufferers and their families.

This 2006 post came to mind just now as I work on journalling our family's journey. At this time I was visiting my soon-to-be husband in the US, it had been exactly a year since my break-up with a guy who denied that his porn addiction was a problem, and I was just at the point of deciding to leave his church in search of one where I'd feel more embraced. This post was sort of my last attempt to reach out to my church peers before leaving for good. I'm not sure, but the topic might be close to your heart also, which is why I'm pulling it from the archives for you tonight:

August 22, 2006:

Last night I hungrily watched and waited as Scott worked over the gas stove putting the finishing touches on our dinner as it sizzled in the wok. It was a beef stir fry with different spices and veggies, including bamboo, fresh ginger, sweet soy sauce, Indonesian dried hot peppers, and his favourite secret ingredient which I am not at liberty to disclose. Served over jasmine rice it was absolutely fabulous, and I enjoyed every last bit of it with my very own set of brand new re-usable chopsticks.

But during supper I let my mind wander to news I had received from home, and I had to fight the tears. It reminded me of an ongoing struggle that I've had ever since my family left Austria to return to Canada, which is namely the struggle to make lasting friendships with our peers at church. Sometimes we weren't in one place long enough to really make meaningful connections. Other times my brother and I were at the age where our peers were more concerned with popularity than reaching out to a couple pastor's kids. We've always been somewhat reserved, tired of changing church families every few years, sick of the politics and insincerity we've witnessed, and hesitant to reach out again and again only to be laughed at, or ignored, or simply tolerated by our peers.

I was reminded of a similar struggle I have felt in my current church, though now that I'm an adult I don't deal with the same kind of insecurities when making friends that I did as a child/adolescent. This time it's more about trying to break into established groups of friends, 'cliques', who felt complete before I arrived and will feel just as complete after I leave.

When I first began attending my (now ex-)boyfriend's church I was blown away by the love and down-to-earth compassion that I witnessed people giving to each other every Sunday morning. The Bible study group I joined was similar, where the worship was sincere and the desire for growth was strongly shared by everyone. I actually felt like a brand new "baby" Christian who was learning for the first time what it meant to live in Christian community with my fellow church members, where prayer and conversation about faith was not limited to Bible studies and Sunday morning services, but was made evident in all of our interaction with other people at all times. It really changed my outlook and made me realize how much deeper my faith still had to grow so that I lived it out every minute of my life, especially with my friends and family.

Two and a half years later, after my relationship ended, I was hurting terribly but the compassion, prayers and hugs I had seen other people receive on Sunday mornings were just not there for me, even though my entire peer group knew what had happened. I needed their support so badly... Surely, I thought, someone must know that I feel like I'm dying inside.

Then I gradually realized that I was no longer being invited to hang out with the peer group that I had gotten to know over the last 2.5 years. It hurt. I felt alone. So I decided to pour myself into my church community and did the first thing that came to mind - I helped to start a young adults group that would hopefully bring people together. I was looking forward to getting to know my peers, hoping they would get to know me as a single person again - no longer as just their friend's former girlfriend, but as their friend as well. Many showed up at first, but slowly the group began to dwindle. Even so I attended as faithfully as I could, and I still adored the community atmosphere at our Sunday morning church services. I wouldn't miss them for the world. Then one night, several months later, we had planned a potluck to which just a handful of young adults showed up. I later learned that a number of them had planned private party for that same night. My heart broke. The following Sunday, and every Sunday since, I have faced a monumental struggle in finding the motivation to attend church. Yes, they show amazing love and compassion, they pray for and embrace each other at the drop of a hat, but I realized I have to be friends with them before I will be sought out, prayed for, and embraced.

I don't want to fail to mention the exceptions - and there almost always are exceptions. One friend of mine who's been there since the beginning has made an effort to go out of her way to keep in touch with me, and she knows who she is. :) If it weren't for her I know that I would have left that church a while ago already. Then there's another friend I'm still just getting to know who arrived on the scene after I was already single and beginning to think about helping to organize the young adults group. She also knows who she is, and I appreciate her kindness very much as well!! There are a couple others, two very wise and more mature church members who make a point of connecting with me on Sunday mornings too, one of whom also reads this blog. ;) Thank you!!

I'm not sure if you're aware of this, but sincere gestures to reach out mean the world to me. I'm a former pastor's kid who's had to jump from one church to the next, who's had to fight shyness and loneliness over the years, deal with insincere attention from others because of my Dad's job, put up with petty popularity games among my Christian peers, say good-bye over and over again to the few real friends I was able to make then try to reach out again at yet another new church... I think it would be understandable that 19 years of this has left me somewhat emotionally exhausted. I am an introvert, I'm not bubbly, I'm not the life of the party, I'm not the kind of magnetic personality who attracts people to me very easily, yet I love people! And I wish that there was a way to get the average Christian church community to understand how important it is to reach out and genuinely welcome newcomers into their established friendship groups. I don't want to be seen as a ministry. I want to be surrounded by folks who see me as an equal and actually care to get to know me.

So after supper last night I was lost in thought about all of this. Scott was a comfort to me, but I also wished I could have been back home to offer my hugs and support to a friend who was struggling with the same loneliness...

Dad still has his ups and downs, but with taking less Dilantin per day (that's his seizure medication), his mind is not as foggy as it was before. He has been incredibly articulate at times, and all the normal dreams and hopes that we humans experience are being expressed by Dad clearer and more often these days. He desires to get better, to pick up his former profession of pastoring, to drive a car, to have friends who treat him like a normal human being who is worthy of respect and worth the time to visit. He wants to have adventures, to use his gifts for singing and counselling, to try new things like learning to use a digital camera and an accoustic guitar, to devote time to his interest in music, model trains, history, Scripture, and so on. What he needs are just a few more friends to help him reach up out of the fog and realize some of his ambitions. The possibilities, believe it or not, are numerous and attainable...

There is always more going on here, but I'll have to post about it another day. Thanks for checking in, and remember, your comments (and phone calls!) are always welcome.