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.

When this man was diagnosed with early onset dementia at 57 years old (same age as my Dad), his son began filming his family's experience. Oh man, I have never seen anything so moving and so revealing about what my own family has gone through because of this cruel disease.

"Forgetful Not Forgotten" will touch many lives out there, comforting families with the knowledge that they're truly not alone in their struggles, and that others have survived all of the same challenges and bittersweet milestones and grieving periods along the way.

Thanks to Zsuzsanna Kilian for the photo

I am downright dog-tired. Spent. Enervated. Outta gas. Kaput. K.O. ...Can exhaustion really last months at a time?

The root of my fatigue is grief. I can't really think of a good metaphor right now, but in a way I've come to see my energy like layers of an onion. Long before all the death and illness in my family, I remember times when my outer layers sometimes felt battered and worn and totally out of strength, but at the time I wasn't aware and couldn't appreciate how much resilience I had left inside, closer to my core.

But in 2004 my Dad lost his job (I had never seen him so despondent) and we grew more alarmed at his forgetfulness, not to mention more financially desperate. Feeling repeatedly shocked and alarmed and desperate for months at a time took its toll on me, but that was just the beginning.

Then I was rocked by Dad's seizures, his surgery, his hallucinations and paranoia, and the disease's steady advance towards its most volatile stage, where it hovered for several years. I was newly married, but Scott and I had no chance to experience our newlywed years normally; instead of pouring them into each other, our first years together were entirely poured into my parents. We did so, of course, out of love, concern, and obedience (1 Tim. 5:8). I re-arranged classes so I could spend my days with Dad while Mom worked at her part-time job. Scott spent his free time with Dad so as to give Mom and me a break. Evenings, weekends, and overnights were fair game for crisis calls when Dad had an angry outburst that Mom couldn't handle, or that even put her in physical danger. Dad needed constant engagement and supervision.

Of course no one was to blame for our agonizing circumstances. This was just the way of things. It was a top-heavy load, one that was bound to teeter and crash if we didn't have more helping hands.

That's why I was also responsible for finding help and friendship for my parents. Mom certainly had no time to ask for help, and with Dad always nearby, she had no way of describing her need to anyone over the phone without Dad becoming suspicious. So the task landed squarely on my shoulders. I did it out of love for my parents, and out of desperation for relief in my own caregiving schedule. My requests for help became a regular occurrence, and I could tell when people were getting pretty sick of hearing from me. But, having exhausted community resources already, I had no option but to ask our church, friends and family for help, with a heap of apologies thrown in and a mounting burden of guilt for being so frustratingly dependent on them for our survival. Running out of options--and out of friends--landed a serious blow to my spirit. We came up empty at our most desperate time, when financial disaster lay just around the corner. That's when I felt like I was being smothered by darkness, depression and nothingness. It reminded me of those drowning and covered-in-mud scenes in Jars of Clay's music video for Flood (check it out below). If my spirit felt anything during this time, that was it.

My nerves were also shot by Dad's inability to understand heartbreaking realities, like why his old friends weren't coming around anymore, why Mom needed 'breaks' from him, why he wasn't allowed to drive his car, and why I was sometimes so stressed because my time with him meant I wouldn't get school work done. During my full-time studies, I spent at least five days per week (at six or seven hours per day) trying to keep him happy and occupied--another exhausting endeavor, all the while wondering how I'd finish my classes and thesis.

Before this situation descended on us, I also had no idea how deeply exhausting it was to have to hide one's grief. We were forced to hide our heartache from Dad and just about everyone else most of the time for three years. We smiled out of necessity when most of the time our hearts were heavy and bleeding.

We also suffered through one of the most bizarre obstacles for dementia caregivers: How do you tell a grown person, your own parent no less, when his behavior is inappropriate? You can't discipline him or give a lecture or send him to his room. You can't take privileges away either. We discovered--and professional advice told us too--that you just have to ride it out. In fact, often you have to agree with the outrageous or insulting or dangerous claims made by a person with dementia. To do otherwise would only make him more volatile. We walked on eggshells 24 hours a day for three years, because at any moment he could become angry at us for not "letting" him drive the car (his license had been revoked by the doctor in '06). I actually had to agree with my Dad's enraged comments that whoever was responsible for him not driving a car "had it coming to them". Can you imagine? I can't tell you how often I questioned the sanity of the words I heard myself saying, just so that Dad would eventually calm down to a manageable state again. Each time that I affirmed Dad's awful notions I felt like I had thrown civility to the wind, betrayed my convictions, and sinned in the eyes of God and society. Of course I knew it was merely a survival tactic, and yet every time it happened I felt crushed and disillusioned, questioning why God would ever allow a disease like Alzheimer's exist, why he would let it cruelly turn my Dad from a compassionate, faithful missionary/pastor/chaplain into a dangerous, foul-mouthed stranger.

Nowadays, when Mom and I attend a support group for families of people with early-onset dementia, we tell these same stories and around the table I see the nods and empathetic smiles of people who've been there and know all about the helplessness and absurdity of our daily existence with Dad.

The stress was incomprehensible. Our sleep was regularly interrupted, but on the nights without emergency phone calls my brain still never slept deeply; I had to remain subconsciously alert for the next crisis call, and the next, and the one after that. I bid farewell to my health, and I was often worried--but never surprised--when I buckled under the influence of the latest virus, or when the knots in my stomach felt like they had petrified into permanence, or when my lymph nodes lit on fire. I couldn't simultaneously keep my parents afloat, redeem my school year, and save my immune system on top of it all.

Health is often the first thing caregivers let go. Friends and concerned onlookers kept telling me to take care of myself, take time for myself, do something-anything-to get away from the stress for a while. They meant well, but they didn't realize that when you're dealing with a difficult stage of dementia, especially when your loved one depends on you 24/7, nothing less than chaos and violence would ensue if you ever actually tried to 'get away from it all'. It just wouldn't work. So we plodded onward, thanking people for their concerned suggestions.

Other less sympathetic folks bluntly told us to put Dad into a nursing home. How little they knew! And how little they seemed to care. Did they even wonder whether Dad was actually ready for it? Whether WE were ready for it? Did they not know that the timeline from touring nursing homes to arranging Dad's capacity assessment to sitting on the nursing home wait list could take years? Did they not consider the terror Dad would've felt had he gone there before he was ready? How could we put him, and ourselves, through that?

On the contrary, the folks at our support group surprise me over and over again with their intimate, heart-felt familiarity with our challenges. They've worn themselves into the ground as caregivers, and they too have been on the receiving end of that same, blunt question: Well, why don't you just put her in a home? an acquaintance asked one caregiver husband in our group. But she isn't ready yet! he told this person. Everyone in our group knows the consequences of premature institutionalization. This in-between stage of dementia, when the victim is depended for survival but too independent for nursing care, drains us to the core; it's almost impossible for the caregiver to survive, yet employing a nursing home too soon would be infinitely worse for us and our loved ones.

Despite everything, my energy held up okay, I think, until last year when three important people in my support system died unexpectedly, and when one relative's suicide triggered the suicide attempt of another close relative. Right in the middle of that, of course, was our move to a different city, my dance on eggshells to help Dad through our relocation to the new house, and the all-nighter we pulled while moving so we could attend my uncle's funeral the next morning.

2009 was our year of death, and all the while, of course, we also watched Dad dying bits and pieces at a time. I wanted so badly to hold onto his personality, his memories, the heart of his identity, to protect him from breaking down, but it was like cupping water in my hand and trying desperately to stop it from dripping between my fingers. It couldn't be done. To this day we still watch pieces of my Dad loosen their hold, fall away, and evaporate out of existence. I feel helpless and devastated, like bits of my spirit fall and disappear with him.

I've never been so utterly battle-weary and drained. When Dad was taken from our home to the hospital in March of this year, it was my most heartbreaking day yet. He was so scared and confused. He didn't know they were on their way to get him, but just before they came for him I had watched him hug Mom (who was weeping), telling her how much he loved her. I wept most of the day too, even while trying to calm and comfort him in the emergency room.

Later on, when the hospital had taken over his minute-to-minute caregiving, I thought my nerves would release their tension, but they didn't. They were stretched and bent way out of shape and they seemed frozen that way. Healing has been surprisingly slow and painful since then, almost like the pain you feel in your fingers and toes as they warm up after being exposed to freezing cold temperatures too long.

Back to my inadequate onion metaphor. Each year of this journey has witnessed the removal of another layer, shrinking from the outer layer of surplus energy down to desperation and farther on down to bare survival. By the time Dad left for the hospital in March the core of my resilience hung by a tattered thread. At that time I was finished school and already employed, working for a tough-as-nails manager who actually had two harassment complaints filed against her. Performing under her scrutiny finished what was left of me holding myself together.

This is all so hard for me to articulate, though, without overflowing into a stream of consciousness like this. In some ways I feel like Frodo near the end of his interminable and hard-fought journey, wounded in body and spirit. When you're exhausted beyond words and when nothing will ever be the same again, what is there left to say?