Dementia: On life-preservers and almost drowning

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.