Balancing Joy and Fury

I’m not sure how to begin here, as it’s been rather a long time since I last wrote anything, let alone posted to this blog.

It has been a wonderful and exhausting spring and summer and it’s leading to some pretty major changes going forward, but as for the subject of this page, Jacquelynn is doing quite well indeed.

I’ll describe a couple of the “epiphany moments” shortly that lead me to speak so joyfully about her improvement, but it is important to understand that there are also frightening and even horrifying moments still occurring. She is indeed much healthier and sharper than has been the case for a very long time, but she still struggles mightily in some ways.   The most significant of those is in expressing herself. Jacquelynn frequently labors intensely to find her words, and sometimes the words that do come are so completely unrelated to what she’s trying to say that it can be difficult not to despair entirely about her recovery. Of course, as she tries harder and harder, she gets ever more agitated and it gets harder and harder for her to find the words.

So, I sometimes try to help. It’s hardwired into me; I can’t just sit and watch her struggle and get madder and madder. So I “help” by asking if she’s speaking on this subject or about that person. However, she’s so focused that she dismisses any such suggestion out of hand and keeps trying to find her own sentences. But, as I asked if she was referring to lunch and she said “no”, I’m no longer thinking along those lines and it takes even longer to get back to the subject of what we’re going to eat for the midday meal.

Yes, I’m trying to curb my need to help in that manner. I do realize that it’ll likely do her more good to get there organically rather than being led. But it’s awfully damned hard to do.

This last Thursday, July 26 of 2018, provided an infuriating example of how hard it can be to lead her and how working so hard to get somewhere specific can lead her into a heartbreaking catch-22 of fury and tears.

We had an inordinately aggravating experience with a credit card company: in brief, after receiving an alert text about a possible fraudulent charge to our account, I called the alert desk and began a runaround that still has my head spinning.

I should interject here with an important little tidbit of information; we had my name put on the account two years ago so I could deal with these situations if one should arise.  

Combining Jacquelynn’s occasional difficulty expressing herself clearly with the fact that we had awoken only moments earlier (it can take her upwards of an hour to get her momentum going and feel fully awake), the downward spiral of identity verification because the account is in her name (even after they acknowledged the information italicized above) is pretty predictable. Heeding the suggestion of the fraud desk representative, we went to the store (it’s a Meijer card) to allow the manager there to verify her ID so I could proceed to manage the account. We did all of that, and HUGE kudos to the staff there; they went above and beyond in their ultimately fruitless attempts to help. The issuing bank refused to recognize the store’s verification even though it had been their idea, and their escalating badgering of Jacquelynn over the phone even after her medical situation had been explained led her completely over the edge. The more they pressed her, the more shaken and nervous she got, and their only slightly veiled accusation that I was feeding her information to attempt to gain access to the account were the last straw. In my opinion, they had by then made it painfully clear that they essentially didn’t want a customer with her medical issues. She was a total wreck when I finally drew a line through the process and did what I could to close the account.

I feel like shit for my part in allowing it to continue as long as it did, but we’ve really needed that card this last year. Life leads us where we need to go, though, and I fully believe that life led us to close that account for very good reasons.

Now, I recognize the need to protect these accounts and the personal information associated with them.   I’m honestly grateful for their diligence in this matter. But this is the EXACT reason we put me on the account two years ago, and even after acknowledging that, they still refused to help. Maybe they technically didn’t do anything wrong, but they sure as all hell didn’t make any legitimate attempt to help, and that means everything to me.

But, as I implied earlier, many things are truly looking brighter and brighter, and one of those things is subtlety.

Since before Jacquelynn’s diagnosis, her understanding and perceptions have been pretty much strictly literal. Innuendo, hints, subtext have all gone entirely unnoticed and unremarked. In the last few weeks, however, I’ve noticed that changing.   Slowly at first, in fact slowly enough to cause me to question my own impressions. But just a few days ago, while we were discussing my woodworking, she chuckled out loud at the inevitable boner joke I worked into the conversation. Her sense of humor and perception of it has greatly increased as her brain continues to heal. This leads to more flirtatious behavior on her part, and probably inevitably, a bit of confusion as she perceives more layers to each conversation, whether they’re intended or not.  Now, I can barely say “wood” without eliciting a slightly naughty grin.

So, the nuanced and slightly dirty mind I fell for 19 years ago (celebrating the anniversary of our first date this week!) is making a return, and that is a very good thing.  Every bit as surprising and exciting is another aspect to that which has returned these last few days, as well:

Typically, over the past months, Jacquelynn has had a very difficult time following specific instructions. For example, as she tries to help with cleaning the kitchen after dinner, she’ll ask where to put things.   If I tell her “on any shelf in the door of the fridge”, I’m almost always going to find it on the top shelf of the refrigerator, or simply left on the counter. Same goes if I ask her to get something for me; “The red cups, right there on the shelf. They’re right in front of you, Love.” Nothing. I’ll swoop in, trying so hard to be mindful of not making her feel like she failed, and retrieve them myself.

 

Lately, though, not so much. The balsamic dressing makes its way right back to the shelf in the door of the fridge, and when I asked her (I test her this way frequently, to try to hone her skills a bit) two nights ago to get me something from the bathroom counter, there was no casting aimlessly about trying to find it, no “what color is it again?”, no delay whatsoever. She simply walked into the bathroom and came right back out with exactly what I had asked for!

The brain is healing!   Yes, it has much more healing to do, but it is clearly and (in my view) undeniably continuing to heal.

Life does (and will) continue to throw challenges our way, but as we fully embrace the concept that life happens for us rather than to us, we know that wherever it leads us is truly for our greatest advantage and blessing.

It is possible to balance Joy and Fury.  The how of it harkens back to an old and seemingly cliche Native American proverb:

A grandfather is talking with his grandson and he says there are two wolves inside of us which are always at battle. 

One is a good wolf which represents things like kindness, bravery, and love. The other is a bad wolf, which represents things like greed, hatred, and fear.

The grandson stops and thinks about it for a second then he looks up at his grandfather and says, “Grandfather, which one wins?”

The grandfather quietly replies, “The one you feed.”*

Feed the Joy, and try very hard to starve the fury.

 

 

*Credit to oneyoufeed.net for the quote

Time Machine

Flashback, September 1999:

Jacquelynn and I have been dating exclusively since late July, and she has invited me out for this gorgeous Saturday to visit the maze at Grailville and perhaps to walk a while along the beautiful wooded Loveland Bike Trail. It’s an almost 3-hour drive from where I’m staying with My sister and mom, so I get an early start, but I do make one unannounced stop on the way…

When I arrive at her (now our) home, I greet her with the freshly toasted bagels I had promised from Skip’s. Her favorite is a simple toasted and buttered sesame seed bagel, while I always got some sweetened-cream-cheese-slathered monstrosity encrusted with crunchy cinnamon or something similar.   As she savors the fresh-baked smell of breakfast, I reach into my front seat and hand her a small, 4″ potted miniature rose bush.

Now, Jacquelynn is NOT one for grand gestures. She much prefers a hand-drawn greeting card to $60 worth of flowers that’ll be in the trash bin in less than a week, and this humble little rose bush lit up her face like a hundred sunrises. She couldn’t wait to get it in the ground, and I ended up warming her bagel in the oven later that afternoon, as she absolutely had to plant her new roses in the lee of the large volcanic boulder in her front landscaping.

That little plant was apparently quite happy in its new home, as it flourished almost instantly.   Within a week, it had rebounded from the shock of planting and put forth a handful of bright late summer blooms before relaxing into its winter stasis.

In the ensuing years, every year saw it bloom bigger and brighter than we could ever have expected.   At its peak in (I think it was) 2014, it stood over 18″ tall. One afternoon that summer, despite my best intentions, I got bored and stopped counting at 300 blooms.

It was late that year that our beloved rose began to dwindle. The pear tree had contracted a blight that spring, and we thought that, just perhaps, the rose had as well.

But the next year was worse. It bloomed, but much less brightly and with far fewer flowers than it had in many years. By 2016, it was the merest shadow of itself, as the sage and succulents that had previously served to highlight it began to encroach upon its space. The bush’s once vibrant leaves were laced with holes from every but that could find it’s withered and drying frame.

2017, of course, brought much darkness and fear into our lives, and our tiny rose bush seemed to embody that; it produced neither leaf nor flower, and the remaining branches were dry as beached driftwood. You had to dig through sage and phlox to see even that, as the once-majestic mini rose appeared to have retreated into the shadow of the boulder which had protected it for so many winters.

Yesterday was Friday, 18th May 2018, and I spent the morning celebrating the fresh growth of flowers around our house. My beloved irises are in full form this year after a couple of still-productive-but-slightly-off years, and the flowering trees in the back are attracting hummingbirds almost in flocks. Even my gigantic apricot-colored rose bush in back has three strong-looking buds sucking water from the soil. I miss my failed dwarf lilac trees from a few years back, but that was entirely my fault. I’ll try again eventually.

I photographed all this and joyfully posted all of them on Facebook, Jacquelynn watching over my shoulder, ooh-ing and ahh-ing all the while. So when we set out on our late-morning walk, I was startled when she walked up to get a close look at the irises out front and gasped loudly.

I’ve become to recognize alarm from her, and I seldom expect good things when I hear it. so imagine my surprise when she beckoned to me and pointed at the boulder.

The lead photograph for this post is what she called out to show me. There, in all it’s glory, was our tiny warrior of a rose bush, pushing bright and brilliant new flowers into the world. Like a phoenix from the ashes, the dead had risen and shone it’s light upon our faces.

I believe in signs.   I believe without hesitation that God/Buddha/The Universe uses our every sense as its voice, if only we’re listening and willing to hear.

You may remember me writing about coming upon a certain song at the moment when I most needed to hear it.   These moments are not accidental and they are not to be ignored or dismissed.

In hindsight:

This little bush began to wither and suffer just as our approximate timetable tells us that illness began its vile work on Jacquelynn. At her darkest hour, for all appearances, it died. Just as her doctors were pretty adamant that she was doing. But she defied those expectations, and now her rose, the very first live flowers I ever gave her, has done the same. This morning, a third full bloom was added to its display, and the soil around it has cleared as the other plants seemingly make way for its triumphant return.

Our walk was glorious, of course. A beautiful morning spent hand-in-hand, chatting with neighbors doing their planting and basking in the sun and breeze. There was more bounce in Jacquelynn’s step as she smoothly stepped over and around buckled cracks in the sidewalk which would normally be cause for greatly elevated caution. She danced lightly around the goose poop that I would typically have to warn her to avoid. She smiled and waived and “How are You”d her way joyfully around the neighborhood like she had never been sick a day in her life.

 

Yeah, it’s going to be an awesome year.

Low Ebb

It’s a feeling that I won’t deny. Yes, some days I feel totally spent and unable to cope. Of course, it’s often on these days that Jacquelynn feels much the same (because like attracts and creates like!). This creates a spiral descent, a Coriolis-effect flushing of all hope for the day right down the cosmic shitter.

 

As terrific a day as yesterday was, today seems destined for the sewage treatment plant.

 

Honestly, I don’t know how much longer I can be “The Strong One”. We’ve had difficulties recently (one reason for my silence here), but I’ve found my strength every time and even come to the realization that many of them were inarguably my fault. My insecurities and fears and, yes, bitterness, have surfaced many times, making already tense situations SO much worse and driving Jacquelynn more than once into tears and worse.

So, I’ve found ways to face those fears and insecurities head-on and come to grips with them. I have, through meditation, prayer, and many hours of self-talk faced many demons these past few weeks. I feel as if I’ve quelled most of them, too.

But I’m still so fucking tired.

How many more days can I tell her six times that it’s time for her pills and endure her sagging shoulders and choked-back tears. She’s tired too, you know. As hard as I’m working to help, all the real work is on her shoulders, and they aren’t particularly broad or robust shoulders these days. So there are days and weeks in which she just feels so defeated and tired of the endless work, and I certainly can’t blame her for that.

She needs me, and I need her, but I’m still SO fucking tired.

Not sleepy. I get halfway decent sleep probably about half the time, so this isn’t that kind of tired. It’s the spirit-tired of looking at plans you had and knowing they’re gone forever. That day trip to visit my family and friends in Indy, or my much-loved forays up to Lexington Ohio in July for Vintage Motorcycle Days. The bucket-list items like riding Route 66 coast-to-coast and to Alaska to see the Aurora.

Those things aren’t going to happen. Don’t mistake me: Ten minutes with Jacquelynn is more important to me than all of that combined, but that doesn’t fill the hole left by accepting their loss.

She too is feeling a similar loss. At times, I’ll catch her sobbing and she’ll explain how she misses working and that leads to the feeling that she’ll never work again. Knowing that she’s going to be on this program for the remainder of her life often makes her feel like it’s all a great waste of effort until I remind her how very far she’s come. The reminder that without this great effort, she’d most likely be institutionalized by now and not have even the slightest clue who I am, let alone be essentially destitute as well sometimes helps ground her then.

The same thought also helps ground me, too. I’m always cognizant of it, obviously, but there are occasions when all the progress seems for naught, or even to disappear entirely for several moments, and those times inevitably terrify me. So, I review my notes, or I talk to her or just hold her for a while, and I spend some short while in simple gratitude for today, for this single minute with her in my arms.

There are low ebb days.   It’s probably inescapable that there will be. Days like today when Jacquelynn can pick up so easily on my mood and despair that she comes to me on the verge of tears and says, “You just look so sad…” and I can’t do anything but agree and apologize. I just have to admit to her that I am just so, so fucking tired. And I’ll agree to her suggestion that we take a nap. And while she dozes, I’ll quietly type away…

 

 

The Dread Of Independence

I had another article planned for today. I had started it last week and, to my shame, never got back to it. But that’s okay; it’s been said that life is what happens when you’re making other plans.

So, rather than the planned rejoicing about Jacquelynn’s improved memories and even recalling things which had previously totally escaped her (SS# and birthday, anyone?!), we’re going to talk a bit about facing a new challenge for which I have clearly not prepared her well. Yes, our savings have been pretty well depleted and despite our efforts to put it off, I am going to have to go back to work, and quite soon.

So, when I finish writing this, I’m going to brush up my resume, write a fresh cover letter, and get busy.

But I refuse to be morose or play the victim here. As you’ve all heard (read?) me say many times over, I fully believe that life happens for us, not to us. This, too, will serve to assist and perhaps even expedite Jacquelynn’s recovery in some way, and I may even have a decent grasp on how:

To begin with, a confession: I have control issues. While I truly believe that this propensity has served us very well in staying on track and keeping Jacquelynn on the path to what will eventually be her full recovery, it may very well also have served her ill in some ways. In enforcing a fairly rigid schedule of meals, meds, and supplement-fortified smoothies, I’m fairly certain that I have stunted, to some degree at least, her return to any level of independence.

My reasons for feeling this way are manifold, but I’ll share just a couple here. In many ways, Jacquelynn is sharper and more capable around the house than she was before I left work to stay home and care for her full-time. Her conversational skills are sharper; she’s more nimble and ambulatory around the house, even picking up and doing a little light cleaning; and she’s ever eager to do and contribute more. But I haven’t pushed her to learn how to dress herself again, and I still put each individual pill into her mouth as she takes her meds, coaching her through each swallow. She needs my help to change the channel on the TV (admittedly, the remote is VERY busy and confusing) and mine is the only number she has the confidence to dial on her cell phone.

My returning to work will serve to force some of these issues to the forefront, and while she won’t like it at all, she will, by necessity, begin to reclaim some of her independence.  I honestly expect that, after a few weeks, she’ll even begin to enjoy it a bit.

I’m not looking forward to this, and not for the reasons some may suspect. It’s going to be extremely traumatic for her at first. Indeed, every conversation about it begins and ends with tears now. But I’m just as likely to be a wreck at first, as I adapt to trusting her on her own. Which is why I’m going to begin, at least, with a part-time job. Initially, I’ll work a few days each week and only a few hours on those days. We have dozens of retail stores within easy walking distance, and with my 2+ decades of retail experience, I’m certain I can get a job quickly, and even have plans regarding which I want to try first.

We are both immeasurably and eternally grateful to those of you who have contributed and shared our GoFundMe campaign, and the money raised will go precisely where I promised it would. It was an extremely long shot that such a campaign would raise enough to allow me to stay home longer, but it did provide some much-needed assistance, and we thank you from the bottoms of our hearts.

Next time, we’ll revisit the above-inferred instances of shockingly effective recall on Jacquelynn’s part. Until then, thank you all for keeping us in your thoughts and know that you remain in ours, as well.

Now, where to find my old resume files….

Better? Really? Hell, yes.

There are days, many days in fact, when I wonder if I have imagined Jacquelynn’s progress and improvement. Days when she struggles for her words so badly; when communicating even the most basic concept seems infuriatingly just beyond her reach; days that find her so dejected and defeated-seeming that I truly think it all may have been just the cruelest of wishful thinking.

Then there are the Miracle Days. These are the days on which I kick myself for ever allowing myself to doubt, for my own all-too-human weakness. It’s on these days when I can barely breathe between noting and relating to her the new, long-lost, exciting and watershed moments as she continually demonstrates, all unknowingly, cognition and brain function unseen for more than a year.

Yes, I get weak. I cry myself to a semblance of sleep or simply lie awake all night, too tired to read and too wracked with despair to close my eyes and invite the nightmares in again. But these nights are fewer and further between than used to be the case, and they get rarer as time flows on.

In complete candor, if I had imagined her progress and improvements, she’d be dead or institutionalized by now. But she is getting better.

She has better endurance on the exercise bicycle now than I do.   Granted, I pedal faster and with higher resistance levels, but she outlasts me every time. There are simple things, too; simple automatic, unthinking muscular-memory things which have quietly but sharply improved. For example, ever since her shoulder injury and subsequent physical therapy in 2016, Jacquelynn has had very limited flexibility in her right shoulder. So, I help her into her jackets which she wears constantly around the house (her weight is still quite low, and she gets chilled very easily). The normal procedure has always been as follows:

  • 1) guide her right arm into the sleeve
  • 2) from behind, reach in front of her and guide her left arm down from its constant position against her chest (as if huddled against the chill), and help if into the sleeve, and
  • 3) move around front to straighten the jacket and ask for a kiss.

As of about two weeks ago, one step has been eliminated; now, as I pull the jacket around her back, she’s already reaching back with her left arm, feeling around for the sleeve.

Maybe it sounds insignificant to you, but please trust me, it’s actually a pretty big deal.

Also a big deal is childhood memories reasserting themselves.   Jacquelynn has NEVER been a person to speak about her childhood. She has long claimed to remember essentially none of it, save for her versions of stories her parents told over the years. She has always been very closed off about it, leading me to suspect that there may have been some abuse or trauma hidden in her past.

Perhaps I was wrong, though. For recently, we’ll be watching a television show or just talking and something will strike her in a familiar way and she’ll relate to me an anecdote from her youth. Amazingly (to me, anyway), she’ll often do this with little or no difficulty in finding words or even names (typically the hardest part for her), too.

But with each memory of home and family also comes more hurt.  She is crushed by her mother’s unwillingness to be of any help whatsoever, and every time it comes up, the hurt and rage seem fit to tear her apart. As many times as I beg her just to drop it, I remind her that her mom’s path is her own and irrelevant to us, invariably something will remind her of it again soon, and it will begin anew.

Can you even imagine?   Could you ever just write off your own child? Regardless of the antipathy that has always existed between them, could you ever hear “your daughter has Alzheimer’s and needs your help” and refuse? Even if you had more money than you could ever need or spend?

I apologize. Not the time or place. But I’m leaving it here so you can see inside just that little bit deeper. So you can understand the hurt and shame that I feel when I post and repost our GoFundMe link.

It has been an odd and busy few weeks, and it looks to get odder and busier as I work to find a way to delay the need to return to work full-time and remain home where I’m needed.

 

Wish us luck, would you?

The Lights Are On and Someone’s DEFINITELY Home!

Earlier this week, I had what I will call (for want of a more flattering description) a meltdown.   It had been an excessively challenging couple of days, with Jacquelynn having almost zero energy and growing increasingly moody as her nighttime sleeplessness translated into daytime petulance. This was all made so much worse by the growing clarity that her mother, for all the money she’s sitting on, is completely unwilling to be of the slightest assistance in her only daughter’s recovery.

On this particular afternoon, it seemed that everything I said and did triggered Jacquelynn in some way, and she would be reduced to tears and frustration, feeling as though I was judging her or snapping at her. Once, she even thought I had cursed at her when it was actually myself I had been swearing at. One final, very minor (in hindsight) confrontation led her once more to tears and I kind of lost it. I fled the room and deposited myself on the exercise bike, all but tearing my hair out in my frustration, and 100% sick and tired of being me. Full to overflowing with self-loathing and seeing only blackness in my vision, it was Jacquelynn who once more came to my rescue with a simple, crystal clear and beautifully prescient observation: “You need to get back to the things that bring you peace,” she said. “Listen to Dr. Dyer again.   Re-read that first book.”

It is an indescribably wonderful feeling indeed when I notice and am able to relate to Jacquelynn new and notable improvements n her cognition, but it is an even more magical and brilliant sensation when she notes them herself. This was the first such moment of several this week.

She was, of course, absolutely right. I knew it the moment she said it, too. Since Jacquelynn first gifted me with Dr. Dyer’s “Wishes Fulfilled” collection (book, 7 audio CDs, and 3 DVDs) in 2013, the (now late) Doctor has been a true guru and mentor to me, and his words and voice bring me peace and restore me to myself.   It has had precisely that effect, too.   I’m progressing through the book for (at least) the fifth time, and the countless YouTube videos, which she and I are watching together, are a truly transcendent experience for me.

Even more than that, though, was the absolute clarity and precision with which the thought was formulated and translated into speech for her. She not only recalled and cherished his impact on me but also remembered and spoke his name without struggle or hesitation. If you only understood how special and unexpected such a moment was, you’d be tearing up just as I am now recalling it. Then to see the light come on behind her eyes as she tilted her head toward me, a smile growing on her lips as she realized what she had just accomplished…

“I did that all on my own.”

This time, our tears were joyous and free-flowing.

Another similar though far less traumatic instance of clarity and recall occurred this morning…

There rests atop our refrigerator a gorgeous birch-bark basket (the photo above this article). A product of her impeccable decorating taste, she’s had it far longer than she has had me, and it’s been sitting right there for years.   Today she looked up at it and said, “I’ve always loved that piece. I wonder what’s inside it?” So, of course, I reached up and brought it down to eye level for her. There wasn’t much in it, as it turns out, save a few hair clips, an emery board or three, and an old greeting card. I picked the card up and read the front to her.   Halfway through my reading, though, she giggled and said softly “I LOVE this one”, already recalling and anticipating the punch line inside. She was actively laughing by the time I got to the inner page and read it for myself.   Yes, it was very funny. Far more significant, of course, was her clear memory of the card and its contents. She realized this just as I was about to mention it, and again her face lit up: “I did it again!”

As recently as a few weeks ago, let alone several months back, this level of casual recall would have been impossible.

Yes, my friends, the lights are coming on, one by one, the thousands upon thousands of rooms in the vast mansion of Jacquelynn’s mind are lighting up and doors are creaking open.

 

 

 

 

 

 

Hero, a poem

I felt inspired to compose a bit of poetry this evening.  I posted it on Facebook, and I wanted to share it here as well.  Thank you for reading.

Hero

 

Faced with necessity, I walked toward destiny.

Embracing need, I fled convention.

Into uncertainty, into fear,

I tread unknown paths on determined heels.

The courage is not mine, the strength I hope only to augment

Is Hers.

 

Her breath is my drive, her light my sunrise.

The power of her determination moves me,

Moves Worlds.

Moves History.

Changes all it touches.

Saves.

 

Facing today, we see only tomorrow.

Embracing Now, we pursue purity.

Into certain success, past fear,

We walk our path with faith and trust.

Her heart, my hands, our strength propels us

Forward.

 

Heart-guided.

International Women’s Day, and My Hero

Today is “International Women’s Day”, and like many other people will undoubtedly do in their own forums, I am going to spend a few paragraphs honoring my women hero.

Much as I love and respect (and miss!) my beloved mother, and believe me, she’s as worthy as any woman on the planet of honoring on this day, I am going to shine the light of reflection and gratitude on my brilliant, brave, and beautiful wife.

As many regular readers here know, my Jacquelynn is an accomplished scholar and scientist.   With an advanced degree in mechanical engineering, she launched her career by turning a then-groundbreaking hand-made diabetic blood tester into a hugely successful mass-produced game-changer for patients and the parent company both. Parlaying that triumph into many, many more in the field of medical science and other disciplines as well, she was known and respected throughout the industry and was the go-to engineering manager for medical start-ups, often turning down new and challenging offers while focused on her current projects.

Today, she sometimes despairs that she’ll never work in her beloved field again. She can be forgiven the occasional bout of fear and even shame, but I must never fail to remind her just what she’s accomplished thus far in her latest task.

She’s recovering from Alzheimer’s disease. This is not possible, according to currently accepted medical knowledge (though that is beginning to shift), but she’s doing it.

It’s not easy, and she still has far to go, but she is inarguably getting better. Even she notices it now, where before I had to point out to her the grains and evidence of progress, now Jacquelynn will stop in mid-sentence and remark “You know, I don’t think I would have gotten/realized/remembered that before.”

Jacquelynn is my beloved wife, the undisputed love of my life and a partner whom I honestly feel I have known and loved through many a lifetime. She is also, without doubt or hesitation, the bravest, strongest, most dedicated and focused individual I have ever known. Woman, man, child or adult, I have never encountered a truer hero and inspiration.

I go through every day just hoping that I can be enough, that I can serve and support her journey sufficiently. I strive to be what she needs me to be, and I can only pray that I can be even a fraction of the Matthew she deserves.

And I ask you again, if you are capable of doing so, to please help in any way you can.  With our finances running low, I’ve launched a campaign to help.  Please read and share the link, and you have our deepest gratitude for any assistance you are able to offer.

https://www.gofundme.com/savingjacquelynn

Namaste.

Moving Forward With(out)

So, it’s been an eventful week-and-change. I’m grateful for your patience as we work to transition to a new physician and other changes taking place here.  I’d also like to thank all of you who have contributed and/or shared our fundraiser.  I can’t do this without all of you, and we’re both so incredibly grateful.  If you missed it, hit the link and if you’re able to help, know that we thank you from the bottoms of our hearts.

Last Monday, February 19th, was our first appointment with the new physician.   While the hour-long drive was certainly no friend to Jacquelynn (she gets really restless and stressed at about the 30-minute mark), it clearly beats hell out of the previous 600+ mile drive.

This doctor’s office is in her house, which is fine, but it presented a couple of definite issues.   First, we showed up about 30 minutes early, which in our experience is pretty standard practice, what with getting first-time patient paperwork filled out and such (especially as we hadn’t received any preliminary papers prior to our visit). But, the front door was locked. Ringing the bell and knocking elicited a rousing response from the dogs in the house, but no other response at all. Moments after we arrived, another vehicle pulled into the drive.   We thought maybe that’s the doctor and she had just run out for her morning coffee, but no. It was another patient who also had an appointment at the same time as ours. And they had driven two-plus hours from Louisville, Kentucky.

It was a nice, sunny day, but a bit breezy on the front porch waiting for someone to open the door, but wait we did as Jacquelynn had a great difficulty with the steps (two very steep steps; one advantage to having a home office outside of the city’s influence is not being required to have handicap access, though that seems extra-odd for a doctor’s office) up to the porch, and was unwilling to go back to the car only to have to repeat the process. The other folks (Mom was the patient, and her daughter brought both her and Dad up) returned to their car to wait in the warmth.

It was precisely 10:00 a.m. when the doctor opened the door, and to say that our first impression of her personally was a tad lacking would be an understatement. She looked as if she had climbed out of bed mere moments earlier, and when we expressed a slight chagrin at having been made to wait outside for the last half-hour, an entirely unsympathetic “your appointment was for ten” was the response.

Then, when the other family knocked on the door and I told her “that’s your other ten o’clock appointment”, she muttered, “I hope not” and brushed past us to open the door. She didn’t let them in, though. Instead, she stepped out onto the porch for a moment, came back in (again brushing past us as we removed our shoes at her insistence), and then went back out onto the porch with her laptop in hand, returning alone a few moments later.

She would explain to us that this family had asked for a Monday appointment but had never confirmed, which I had, earning us the spot. I couldn’t shake the feeling, however, that we had both been scheduled and left to a “first-come-first-served” status.   Rather than make them drive all the way back to Louisville, she explained, she offered them a 1 p.m. slot, which they would return for. Would we have been chased away if Jacquelynn had agreed to return to the car to get warm?   Who knows?

Yes, the remainder of our experience was colored by this first few minutes, but it really did just get worse.

When asked for our new-patient papers, I remarked that I hadn’t received any, which elicited another surprising response; she all but insisted she had emailed them.   Honestly, I was expecting her to go and check her sent items in an attempt to prove it.

But, after wasting twenty minutes trying to fill out the forms while she began questioning us, Jacquelynn’s anxiety levels jumped further as one declaration followed another, insisting that all fillings, in addition to her root canal/post must be removed ASAP, in spite of the fact that earlier heavy metal toxicity tests were all negative.  Order followed order followed proclamation followed declaration, one atop the other, each accompanied by a blanket statement that each was a problem “100% of the time, although I’m not allowed to say ‘100%’, but I still do.”  She spoke quickly and without offering the slightest opportunity for us to interject.

This went on for a while when finally, it became clear to me that Jacquelynn was near her breaking point.   This is when I stopped the doctor in her tracks. I told her that both of us were very uncomfortable with her and with the conversations thus far. She immediately leapt to explain how she always runs through first appointments like this so as to provide patients with maximum value for the time. This seems counterintuitive to me, given the higher anxiety levels of most patients with Alzheimer’s, and I expressed that thought.   “I don’t get many complaints”, was her (paraphrased) response.

It went on like this, back-and-forth, for a few minutes, when Jacquelynn finally put her hand on my arm. I looked back at her to see near-fury on her lovely face as she said in a tightly controlled, clipped tone “I’M RIGHT HERE!” She unloaded on the doctor (and me, a little) for speaking around her the whole time.

This little exchange altered the tone of the rest of the two-hour-long appointment. It continued at Jacquelynn’s pace and tolerance until business was completed and we left.  I, of course, felt pretty guilty for participating in the “talking around” Jacquelynn bit, which I had promised not to do, and she let me have it a bit on the way home. Honestly, I was just trying to get everything done and get her out of there as quickly as I may. It was pretty clear from very early on that this wasn’t going to be a doctor-patient relationship to pursue. But, I had already paid my $475 fee and was going to get as much as I could to help my wife from our time as possible, and I did get some info we will use going forward.

But we will not be going forward with this doctor, which is why I’ve refrained from using her name at all.  She may be absolutely the best possible physician for someone else, and I’ve no wish to color anyone else’s opinion unduly.

I felt SO excited and positive about this new doctor, a close, experienced physician familiar and schooled in the Protocol, to shepherd us through the next phase of Jacquelynn’s treatment. By the time we returned home, I was quietly furious with myself for misreading what I felt was true guidance toward this particular doctor. Eventually, though, I realized that it wasn’t the doctor I was guided to, it was the experience. I, we, needed this day to show us that it isn’t a particular doctor which is going to get Jacquelynn and me through this. This is her, our journey. Right now, using what we’ve accomplished thus far and following Dr. Bredesen’s guidelines and Jacquelynn’s own indomitable determination, we will stay on course and continue to improve. Of course, we will eventually seek another physician who participates in the Protocol to advise and guide us, but for right now, we’re simply going to sail the course already charted and tack into the headwind of faith and momentum.

GoFundMe

Yes, friends, it has become necessary for even the proudest and most stubborn of us to reach out for help.

Today I posted a plea to GoFundMe.com to help allow me to remain home and minister to Jacquelynn for a bit longer.  Otherwise, I will soon be forced to return to work and leave Jacquelynn home alone.

Don’t get me wrong: I honestly miss working.  More down time, for one thing.  But, to put it as directly as I can, Jacquelynn simply isn’t safe on her own yet, and to leave her alone is just too dangerous.  Almost worse would be leaving her in “medical” care, as their training and instincts would likely run counter to the protocol which has brought her so far, and I can not and will not risk setting her back or, worst, destroying all the progress she’s made.

So, if you’re able to help, we are hugely grateful.  If not, please share the link and disseminate it as best you can.

https://www.gofundme.com/saving-jacquelynn

Thank you all so much.  I promise I’ll have a new post here soon to update you on our search for a new physician for Jacquelynn!

 

Matthew