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

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.