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?

 Life used to be 'normal'. But the onset of my Dad's dementia changed all that.

We no longer fit the mold. With simple tasks at hand, like eating a family meal or watching a movie, chances are we'll find an awkward and disjointed way through it. If our task requires contact with the public, like grocery shopping or an evening walk, chances are eyebrows will be raised along the way.

If you have a close relationship with mental illness or dementia, then you know what I'm talking about.

Life is so much easier when, in the privacy of our home, we as a family can shape our expectations and activities of daily life around my Dad's random and unpredictable condition. It's called survival.

On the other hand, our stress goes through the roof if Dad's random and unpredictable ways, along with our coping methods, are forced into a 'normal' mold, which usually happens when we leave the safety of our home for the misperceiving and unforgiving world beyond.

I can't tell you just how many strangers we've caused to frown in confusion over the last few years. We often get strange looks from bus drivers, store clerks, and neighbours. Sometimes Dad will sing with gusto at church even though he doesn't know the words to the song, and the people around him either stare, smirk or exchange 'knowing' glances with each other. The irony is, of course, that if they truly *knew* anything about dementia, their looks would be less 'knowing' and more compassionate!

No, Dad won't always behave in socially-prescribed ways, and neither can the rest of our family if we want to help him feel valued, respected and as informed as possible about what is going on around him. Dad will say things that don't make sense, and sometimes we have to say equally strange things in order to help him feel at ease. The world operates on one schedule, but Dad operates on another, and to keep Dad safely operating in society we often need to walk in step with him.

So expecting our words/actions/choices to be 'normal' just isn't realistic anymore. Masking our 'different' lifestyle doesn't work either, and yet sometimes cultural traditions almost force us to do just that. That's why holiday time can be extra stressful for us, with all those formal dinners and social gatherings. I used to enjoy them so much, but they've become much more challenging since Dad got sick.

This article, about US Thanksgiving and the traditions that surround it, highlights just how stressful these time-honoured traditions can be. When I think of holiday traditions, I think of family and friends enjoying each other and their cultural heritage. But sometimes our traditions create so much work and unrealistic expectations that we end up spending more time separated from or even frustrated with our loved ones. Julie Barnhill writes:

Ah, in the immortal words of Tevye from Fiddler on the Roof, "Tradition!" Nothing quite rings in the holidays (yours, mine or someone else's) like:

Tradition! The time we eat our meal.

Tradition! The family with whom we eat our meal.

Tradition! The types of side dishes we do or do not serve at our meal.

Tradition! The tensions and stress that invariably follow!

I'll let you in on a little secret: Tradition can be highly overrated. Sometimes you just have to shake things up a bit. Or at the very least, be willing to relax some of those "that's the way it's always been done," rules in a concerted effort to make the traditions we keep joyful, meaningful and doable. (Imagine that!)

(...) As you go into the holidays with your laundry list and ideals wrapped in traditional expectation, slow down long enough to examine them and ask yourself the following questions:

Is this tradition moving my family closer to a holiday memory filled with joy?

Is this tradition adding meaning to our holiday?

Is this tradition doable, given our current situation, circumstances or family dynamics?

If you answer "No" to any of the above questions, be bold! Be brave! Be tough! And chuck what's hindering those things from happening. And if 3 p.m. is the hour of choice for Thanksgiving dinner, suggest another time such as 9 a.m. and serve turkey sausage for breakfast.

Traditions are useless if they don't support quality time with the people we love.

That's why I become restless as major holidays approach... My family is going to be in social situations where everyone will expect us to act in predictable and traditional ways which, for my Dad and the rest of us, is no longer possible.

I'm eager to establish new traditions for my family, ones that work for us and draw us together, ones that can be accepted and understood by anyone who happens to observe us or join us along the way. I want my parents to be at ease, and I want our loved ones and acquaintances to be at ease as well.

I'm not sure how to get us started in the right direction though. We still feel obligated to fit our new family dynamics into traditional molds. How do we get out from under our self-imposed pressure to conform? How can we start fresh traditions without feeling guilty about leaving other treasured customs behind? How can we invite others along with us on this new journey? If you happen to have any ideas, we sure could use them!

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Get Julie Barnhil's full article

 Let me share a joke I just heard, about burden-bearing:

A child came home from Sunday School and told his mother that he had learned a new song about a cross-eyed bear named Gladly. It took his mother a while before she realized that the hymn was really "Gladly The Cross I'd Bear."

I'm quite discouraged. Another long-time member of my parents' church recently (just last week) referred to helping my Dad as "babysitting". I wonder if that's the predominant attitude about all this, as though Dad's heart, mind and soul are already lost, and it's just a crazy man who can't be by himself.

I'm just at the point where I don't know what to think anymore. So often it seems that we fit right into the James 2:15-16/1 John 3:17 scenario. So many people tell us they'll pray for us, but I wonder whether they actually do pray, and what they *really* think about my parents and our situation. And regardless of all that, their prayers are not backed up with tangible support anyway.

And I'm not talking about people who are burdened down with their own major struggles, but about those I've seen who do have the time to help but choose to spend it on watching television, going to the movies, hanging out with friends, playing video games, and so on. I just don't see how this is compatible with the Christian's calling in Romans 12 (v. 10-16). It's like the Christian life can so easily be compartmentalized... being spiritual and prayerful at church gatherings is fine, but then holding onto our "right" to fun, leisure and entertainment is also acceptable - even celebrated, because "God created fun" and we "deserve" it. How can the Body of Christ carry on this way without first making sure all of our members are cared for (1 Cor. 12:22-26/Gal. 6:9-10)?

I have no problem admitting that I used to be that way before my parents fell into this mess. Our struggle to find help revealed much selfishness and darkness in my own heart. But now that I've woken up to this in my own life, how do I live out Hebrews 10:24? I just wish the mature believers in our churches would realize it in themselves too, take that step of faith, turn their lives around and *truly* die to themselves every day the way Christ calls us to. Not just for my parents' sake, but for the sake of their relationship with God, and for all of the other people who could potentially be comforted and supported if only more of us Christians lived out the "always" in 1 Thess. 5:15.

How many of us praying, well-intentioned Christians are cross-eyed bears, and how many of us actually bear one another's burdens? How many of us truly bear the cross?

This is just my ongoing frustration with the culture of Christianity in North America as a whole. We're a long way off from Acts 2:44-47 these days, and I wish I knew how to help change that somehow.

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.

Dad and I have been on the go ever since his change in medication! I never dreamt one less pill per day would translate into driving around the countryside, meeting new people, visiting old friends, getting to know my community, learning history, and going on photography jaunts day in and day out! It's pretty striking to see the difference in Dad now that he has less Dilantin clouding his mind. Dad's energy level, ambition, curiosity and rootedness in reality have skyrocketed during this time, which has really kept me on my toes. In the last few weeks Dad and I have frequented historical sites, attended cultural events, visited local tourist sites, and taken in free classical concerts. I have to say, I've really enjoyed myself, and my only major complaint is that I am no longer able to spend my days at home working on my thesis. The cost so far has been $1500, which I've spent on tuition fees just to be enrolled in school, while getting nothing done. What I desperately, desperately need is other people to come over and spend time with Dad a few hours in the morning. I just can't express how badly I need to redeem the rest of my school year. Why is it that so many people just don't seem to realize the cost of caregiving, and how life-changing their long-term help might be to caregivers? It's all good for people to tell me to depend on God, but we all know God isn't going to erase my school debt. Nor is He going to finish my thesis for me.

I've recently connected with Christians from a church my Dad formerly pastored. They actually just survived a much greater trauma than we are currently, so they know just how meaningful it is to have friends share in the task of burden-bearing. One of them has already spent a morning with Dad, and will be returning on a regular basis in order to offer respite to my Mom and me. We are extremely grateful to God for answering our prayers through this man! And the remarkable thing about his visits is that he drives 1.5 hours one way just to get here!

Meanwhile, my Clone and I have been planning dinner parties in order to resurrect my parents' social life and opportunities for meaningful fellowship and friendship. Mom is way too busy and tired to do this herself, but she has also admitted to being painfully lonely this year. So, Clone and I came up with a plan to organize small dinners for my parents and their friends from far and wide, one family at a time. We are thoroughly enjoying our interaction with the folks who've sat at my parents' table so far, and we look forward to many fun dinner parties in the weeks and months to come! We're also grateful for our family who've invited my parents to their place in the last few weeks; this gives us much-needed rest, and gives me snippets of time for my studies.

Speaking of which, I have a research ethics request form to finish. Thanks for dropping by!

Our doctor recently ordered that my Dad's intake of Dilantin medication be reduced. Dilantin is an anti-epileptic/anti-convulsant drug which Dad has needed since his first seizure a year ago September. One of its common side-effects, which is really unfortunate for people trying to cope with dementia, is mental cloudiness and confusion. It has made life more difficult for Dad than it needed to be, and for us - his caregivers - as well.

Within the last couple weeks we heard from our doctor that Dad should be administered one less Dliantin pill per day, and both Mom and I have been surprised at the results. On the negative side, Dad experiences tremmors in his arms and legs because of the reduced level of Dilantin in his system. But the positive changes have been the most outstanding. It's his increased mental clarity that has encouraged him and us! How does this look in real life? He's able to buckle himself up in the car without incident, and is able to find the car door handle most of the time. He wasn't able to do these things before his Dilantin reduction. He is much more articulate, using more sophisticated words and expressing himself a little faster and more clearly. Since starting on Dilantin Dad has woken up and wandered throughout the apartment several times every night, always watched by Mom to make sure he didn't get lost. With the reduction in Dilantin, his nightly wandering routine has shortened; Mom says getting him back to bed is easier now. He is also more self-aware, and aware of his health situation. He is slightly more able to reason, and is also a little better at holding his own in a conversation. He isn't recovered, mind you. But any improvement is worth celebrating, especially when we feel like we've gotten a little piece of our Dad back, and Dad feels more empowered to hope.

Tonight we had my parents and other family members over for a low-key dinner. Before heading out the door, Dad turned around and said to our guests, "You know, I want to tell you something," and proceeded to share his joy and optimism at these recent improvements in his life. It's a joyful point in a painful, exhausting roller-coaster. So we cling to moments like these.

It has been one week since my Dad's twin brother departed again, after flying out from Germany for a wonderful visit with our family. But this week has been difficult for Dad... the dementia messes with his memories of the visit; sometimes it was good, other times not so good, and on one or two occasions he was unable to remember the visit at all. It has also been a tumultuous week... Dad says he wants to see his brother "Now", and doesn't seem to understand why his twin can't just come back in an instant. We've had to handle fits of anger, despair, sobbing, and depression at all hours of the day or night. So we are tired and sick.

But it seems as though Dad is beginning to settle down again, thank God! And when he settles down, he often stuns me with the most breathtakingly profound spiritual thoughts and reflections, as he did again tonight as he, Mom and I read the Bible together (Psalm 119, to be specific...)

You know, my Dad is not 'crazy'... he is definitely not well as he struggles against the dementia, but he is still live in there, overcoming the power of the disease whenever he possibly can. And we are deeply appreciative of all of our friends who don't see a 'crazy person' when they look at Dad, but see instead a hurting and lonely soul who needs to be wept with (Rom. 12) and loved (1 Cor. 12) on a regular basis:

Be devoted to one another in brotherly love. Honor one another above yourselves. Never be lacking in zeal, but keep your spiritual fervor, serving the Lord. Be joyful in hope, patient in affliction, faithful in prayer. Share with God's people who are in need. Practice hospitality. (...) Rejoice with those who rejoice; mourn with those who mourn. Live in harmony with one another. Do not be proud, but be willing to associate with people of low position. - Romans 12:10-13, 15-16

But God has combined the members of the body and has given greater honor to the parts that lacked it, so that there should be no division in the body, but that its parts should have equal concern for each other. If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it. - 1 Corinthians 12:24b-26

[Encouragement] is the opposite of flattery, which uses words to entice and manipulate. The flatterer does not bother to discern the true character of the other person, but says whatever he must say to win the person over to his own designs. The gift of encouragement also differs from a mere pep talk that seeks to prop up the weary with positive generalizations. Instead, it sustains the person by observing his strengths, and affirming them in specific terms. -- From a Hebraic meditation

My family has been made 'weary' through the last several years of disability, unemployment, caregiving, isolation, financial struggles, emotional breakdowns, and physical and mental burnout.

Many people wonder how they can possibly encourage someone who's going through major difficulties, especially the kind that are not easy to identify with. Speaking on behalf of the 'weary', I wanted to share the quote above as a good first step in encouraging people around you who are facing major challenges.

IN A NUTSHELL
I'm a wife, caregiver, book worm and global nomad. I'm a missionary kid & pastor's kid. A fan of history, science, travel and HGTV. I'm a Christian who hates labels. I'm also a student of every subject under the sun.

A LITTLE MORE ABOUT
Churchy stuff
I love reading, thinking and discussing the Church--our church history, our present-day church, the global church, pretty much every church topic under the sun.

I'm nowhere near being a theologian and I don't pretend to have all the answers.

But for 20+ years, as a missionary kid & pastor's kid, I observed the church's public face and its behind-closed-doors face as well.

And thanks to my Dad's interaction with others in ministry, I've sat through countless ministry retreats, meetings, and dinner table talks about church as well.

So I've got this experiential foundation in church stuff, and now I'm trying to fill in the gaps by learning as much as I can. I also write a blog about church.

Being a young caregiver
I'm crawling my way up from total burn-out after 2.5 years of helping my parents get through the most chaotic and agonizing phase of my Dad's dementia.

I'm also struggling through the grief of losing my Dad so early in life; he's 64 now, and his downward spiral began when he was only 57.

Now he's in the advanced stages of dementia. I miss being able talk with him (we used to talk about church and all kinds of other things) and I miss getting advice from him too.

These days I barely know how to respond to what he's being forced to endure; getting my brain to accept what dementia does to a human being is like telling a computer to bake a cake. It doesn't compute.

What keeps me blogging
I often wonder, how do I...
• Live in the moment with an eye to eternity?
• Ground myself in the Word while staying open to the Spirit?
• Overcome evil with good, especially the stuff hiding behind 'Christian' attitudes, trends and traditions?
• Lead a lifestyle of passionate wisdom *and* worship?
• Love God with all my mind, heart, soul and strength?

So here at widsith I write to find answers to these questions and (when you comment) I get to hear how they're being answered for you too.