Dementia: It’s the little things..

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Sometimes I think the dementia is having fun with me.  Early this morning, I was getting ready for church and was going to brush my teeth.  I was thinking toothpaste, but my brain had it’s own agenda.  Sure enough, my right hand picked up a can of shaving cream!  I suppose you’re thinking I squirted shaving cream on my tooth brush, but I’m not that far gone yet.  But I did chuckle for a moment at what that might have looked like.  And tasted like.  Yuck!

Little did I know, that was just the beginning of my day.  The dementia kept after me in church, resulting in some mishaps.  All in all, I think it had its way with me.  As I write this, it seems to have finally let me be.

I’ve been thinking of creating a t-shirt that reads, “I am demented.”  Not sure what kind of picture I’d put on it, I’m in the early stages of production.  Might as well have fun with it, it’s sure having fun with me.

Cookie and I have been debating what to do about our housing.  It’s hard to plan, not knowing how fast the dementia will be processing.  At the moment, it is clearly getting more troublesome, and showing some momentum.  But it could plateau again, and therein lies the challenge.  And we have to factor in our three Chihuahuas, which is a major complication.  They don’t seem all that worried, if you know my meaning.  As long as they get their treats, they’re good for a new location.

This month I apply for Social Security and for my clergy pension.  I am not looking forward to filling out the forms.  I hadn’t planned on retiring this early, but such is life and I’m sure that I’ll adjust to it.  I really don’t have much choice these days, the dementia calls the shots.

It is a learning process and I’m glad you’re all here with me.  Enjoy the 4th, and all the good things that you’ve been given.

Fr Dave

 

 

 

 

Pharmacology for Dummies

Well, I’m back to civilization, after a week in the Upper Peninsula of Michigan, and three days in Madison, WI, visiting daughter Chana and her fiance Mike.  I know you’re all wondering, “What did you do on your vacation?”  Well, among other things, I spent time in two hospitals, and got to ride in an ambulance for the first time as an actual patient.

A week ago today, I got what was either a nasty case of heartburn or a heart attack. Since I rarely get heartburn, the docs were worried about my heart.  Having had open heart surgery back in 2003, it was hard to tell the difference.  The esophagus and the heart share the same nerve bundle, being so close together, and they’re known to mimic one another.  I know that sounds a little weird, but hey, that’s what they told me.

After spending an hour or two at the Emergency Room, I was sent by ambulance to a second hospital in Petoskey, Michigan.  They have an excellent Cardiac Unit there, and I spent a very long Tuesday and most of Wednesday getting poked and prodded.  My Doc sent me down to the Cath Lab, where they inject dye into the heart, to discern if there’s a problem.  Happily, there wasn’t, and so they gave me medication for the heartburn and I was happily discharged at 8:30pm.  I was chauffeured back to the cabin, by my brothers Chip and Ken.  How’s that for spicing up one’s vacation?

Sometimes the dementia takes a back seat to other maladies.  The bad thing about an illness, including dementia, is that you’re not immune to others.  Each malady has its own treatment plan, and almost all include medication.  All medications have side effects, and some of those you have to live with.  The bad thing about dementia, of course, is that you must remember to take the meds.  And even at my early onset stage of the illness, it has already become a problem.

I can still remember my younger days, when I took no prescribed medications.  Those were the proverbial good old days, when I never thought of pills.  My ignorance of pharmacology was a truly blessed thing.  But then along came cholesterol and heart issues, and other assorted problems.  My medication count has climbed to fifteen now, and it shows no sign of stopping.  And so not by choice, I have a brand new hobby.  It isn’t easy keeping track of all those medications.  Of course they can’t be taken all together, that would be too easy.  I have my morning pills, my evening pills, and some that are in between.  Some are pills, some are capsules and they come in all kinds of sizes.  I hate to admit it, but I’ve been forced to purchase those funky plastic med organizers for my stash.

Life is changed, not ended.  This has become a daily conversation:  Cookie asks, “Did you take your medication?”  “Which one” I reply.   I get the look, and then we have another med discussion.  It’s become a daily conversation in our lives,  as we struggle with the illness.  Thank you for your thoughts and prayers, and for sharing the journey with me. And now it’s time to take my pills, if I can find them after being on vacation.  I wonder; is there a med for that?

 

Dementia at Night

Those folks that see me on a regular basis, often tell me that I look tired.  I do, and that is another unwelcome part of Dementia.  It disrupts the sleep cycle, and deep sleep in particular.  Even with a strong sleep medication, I occasionally wake up in the middle of the night, for no apparent reason.  I don’t usually get up and wander, as folks with more advanced cases seem to do, though I’ve done that on occasion.  My wife Cookie has me well aware of it!

Though I’m not an expert on such things, it seems logical that sleep deprivation would disrupt normal brain functions, especially memory.  That has been true in my case, though it’s been a gradual thing.  Those who see me on a regular basis probably  don’t notice it much, but I am very much aware of it happening.  I am also afraid of where it is leading.

I am taking some medications that might be described as “brain food”.  As my doc described it, the brain has reduced capacity for memory storage because of dementia damage.  The medication provides food for the brain to make up for it.  Unfortunately, the medication cannot restore my brain to its former capacity, because of the damage previously done.  Of course, this is much the same issue that NFL players and others are struggling with, the brain damage already done.

I want to thank all of you for journeying with me, as I try and make sense of it all.  I can sense the power and love of the Lord in each and everyone of you.

God’s peace,

FatherDave

 

 

 

 

 

Being a Good Listener

In December of 2003, I was halfway through three years of seminary.  While on Christmas break, I experienced a heart attack.  I ended up in the hospital on Christmas Eve, and received a stent for Christmas.  It was definitely the best Christmas present I got that year!  And then in early January, I got a second one.  And then things got scary.  In early February, I knew there was something seriously wrong with my heart.  I went into the hospital overnight, but the stress tests they gave me revealed absolutely nothing.

That night, I ended up speaking with a nurse on the cardiac unit.  I told her I knew there was something wrong with my heart.  She gave me a bit of advice that I never have forgotten.  She said, “No one knows your body better than you do.  Trust in what your body is telling you. ”  As I conversed with my Dr. the next morning, I told him that there was something definitely wrong with my ticker.  He replied, “I not saying I don’t believe you.  But I can’t do anything until I can diagnose and document the problem.  He then had me do another stress test on the treadmill, which I passed quite easily.

The next month was kind of scary.   I knew there was something wrong with my heart, but I had no way to prove it.  As the days went by, it continued to get worse, and I began to experience feelings of dread.  I would feel twinges of pain when I lifted things up off the floor.  I finally ended up going back into the hospital and this time, I failed the stress test.  The next day I had open heart surgery and received a triple bypass.

I’ve never forgotten those words of wisdom that I received from that nurse.  Over time, I’ve learned to listen closely to what my body’s telling me.  Listening allowed me to discern the early onset of my dementia, caused by lesions in my brain.  I was able to catch it early, and to get on medication.  What I have can’t be cured, but the meds I take slow its progress.

I’ve learned the hard way, that my mind and body really do communicate.  The same true is true for all of us, if we learn to pay attention.  The golden rule in medicine, is to catch things early and get treatment.  I’ve wondered at times whether the lesions and my heart disease are somehow all related.  Unfortunately, there’s no way to know, given the current state of medicine.

Train yourself to listen.  Meditate, if you will on what your body is saying.  It will improve the quality of your life, and who knows, like me you just might save it.

Blessings,

Fr Dave

 

Is there life after Dementia?

In the eyes of my dog Paco, I haven’t changed a bit.  I still provide the same lap, provide the same treats, and pretty much cater to his wishes.  It’s a strange thing to comprehend, that my mind is gradually changing, as the Dementia advances.  For most folks, I seem the same today as I was yesterday, a husband, father and an Episcopal Priest.

But behind the curtains, my brain is slowly changing.  My brain is not the same it was a few years ago.  It’s as if someone has moved into my brain and is, well, changing things around.  The changes have been gradual, and haven’t been life threatening.   But there is some redecorating going on, and it often doesn’t feel good.

The medication that I am taking are designed to slow such things down.  They can’t reverse the damage and make the lesions go away.  They each have their own side effects, and have created a “new normal.”  The fog inside my head has become a steady, demanding tenant.

I decided to create this blog, to describe some of my experiences.  Hopefully, it will allow me to help make some sense of things.  One hears the word “dementia”, and often fears the worse;  I don’t think at this point that it needs to be that way.  Life does goes on, and perhaps my musings will be comforting to others.

I hope you will read my musings.  I am not a Dementia expert by any means and can only share those things within myself.  I need to say that I am writing these words primarily for myself.  If others find them to be helpful, I’ll be blessed by that.

For those who share the illness, you will be in my prayers.  I do believe there is life after Dementia, both on earth and with the Lord.  May God bless you and give you strength, as you struggle on your journey.  And I hope, sometime you’ll want to share your story.

Blessings,

Fr Dave